What is CRPS? that the ischemia that occurs Lifting the veil CRPS generally occurs after a when the blood flow to living tis- fracture, sprain or soft tissue dam- sue is stopped for a few or more on complex age to an arm or leg. "In the days hours, and the reperfusion that following the injury, the limb follows when the blood re-enters
NEDA TOOLKIT for Parents
Table of Contents
Common myths about eating disorders………………………………………………………………………….6 Eating disorder signs, symptoms and behaviors………………………………………………………….9 Ways to start a discussion with a loved one…………………….………………….………………………13 Advice from other parents: What to expect and how to respond………………………….17 Why parent-school communications may be difficult…………………………………………….20 Useful online resources for eating disorders……………………………………………………………. 21 Treatments available for eating disorders………………………………………………………………….24 The evidence on what treatment works………………………………………………………………………30 How to find a suitable treatment setting…………………………………………………………………….56 Treatment settings and levels of care………………………………………………………………………….59 Questions to ask the care team at a facility……………………………………………………………….61 Questions to ask when interviewing a therapist……………………………………………………….62 Questions parents may want to ask treatment providers privately…………………….63 Online databases to find suitable treatment………………………………………………………………64 How to take care of yourself while caring for a loved one…………………………………….65 Navigating and understanding insurance issues……………………………………………………….68 Sample letters to use with insurance companies………………………………………………………75 How to manage an appeals process…………………………………………………………………………….83
NEDA TOOLKIT for Parents
The NEDA Educational Toolkits Story
Parents and Educators.the starting point
In September 2007 the Board of Directors of NEDA Using the core questions we decided the Parent and officially approved the organization's new strategic Educators Toolkits would be created first. Additional priorities, listing educational toolkits as a new NEDA target audiences will include Coaches and Trainers, priority fitting the new mission Health Care Providers, and Individual Patients. We then hired ECRI Institute, a recognized expert in providing "To support those affected by eating disorders and be a publications, information and consulting services catalyst for prevention, cures, and access to quality internationally for healthcare assessments. Their ability care." Educational Toolkits were created to strengthen to translate work on behalf of the eating disorders existing materials and provide vital information to community into useful, real world tools established an targeted audiences. A list of audiences was prioritized excellent partnership for creating the content of the by the board and acts as a reference for ongoing materials and toolkit development. Parents and Educators.the process
The toolkit concept
ECRI initially created two separate toolsets with a The initial concept of the toolkits was to tie together consistent tone. We brought together two focus groups existing information along with the development of to guide us in the types of information to be included new materials to create complete packages that would for each of the audiences – parents and educators. help targeted audiences during critical moments in ECRI conducted additional interviews with interested their search for help, hope and healing. They are elementary and high school teachers and families. intended for guidance, not for standards of care and Next, ECRI researched and revised existing NEDA would be based on information available at the time of educational materials and handouts (as needed) and created new materials as appropriate for each kit. The result was a draft set of "tools" for each toolkit. Some Creation of the toolkits took thoughtful consideration. basic information is common to each; other tools are We identified several key questions as we began unique to each toolkit. As with all our materials, we working on this project. First: "What is a NEDA want to increase the outreach and support to our Educational Toolkit?" led us to ask ourselves these constituents while providing reliable information to the general public about the unique and complex nature of eating disorders. Who is the audience we are trying to reach? All focus groups agreed that an electronic toolkit, How many different toolkits will we develop? accessible via the NEDA website, would be the easiest, What should a toolkit contain? most up-to-date way to make the toolkits available. How do we include our stakeholders in the NEDA researched and reviewed several online toolkits, development of the toolkits? looking for the best elements of each that could be How does our audience want to receive the toolkit used to inform the design concept. The final design once it's developed? plan for the organization of each kit was created by How do we market the toolkits? designer, David Owens Hastings. ECRI then produced What is the plan to revise and enhance the toolkits the final documents that are the body of each of the first toolkits. The focus groups reviewed materials one more time and made suggestions for revisions. Their excellent edits and useful comments were integrated into the drafts. Joel Yager, MD, and additional clinical advisors were final reviewers on all documents. ECRI then submitted the Toolkit documents to NEDA.
NEDA TOOLKIT for Parents
Beyond parent and educators toolkits
We fully recognize that not all the information within each toolkit will be able to address the diversity and the nuances of each person's and/or families unique circumstances. Our intent is to provide a one-stop place for a comprehensive overview relating to eating disorders for each audience. We have included resources for further information and will be going deeper as funding permits with each audience. We are imagining at this point in the project Parent and Educator toolkits version 1.0, then version 2.0 and so on. The lifecycle of the toolkits is an important aspect in managing this strategic priority for the organization. Our goal is to maintain the usefulness of the toolkits by reviewing and revising each at two-year intervals and including the most up-to-date research and information. NEDA's clinical advisors will be primary reviewers, along with others invited by NEDA, including members of professional organizations that will be disseminating the toolkits. We are currently seeking funding for the ongoing development of toolkits, as well as distribution and marketing. If you or anyone you know may be interested in contributing to, sponsoring or providing a grant to support these efforts, please be sure to contact our Development Office at 212-575-6200, ext. 307; We hope you'll find these toolkits useful and will share this resource with others.
NEDA TOOLKIT for Parents
NEDA TOOLKIT for Parents
Common myths about eating disorders
This information is intended to help dispel all-too-common misunderstandings about eating disorders and those
affected by them. If your family member has an eating disorder, you may wish to share this information with others (i.e., other family members, friends, teachers, coaches, family physician).
Eating disorders are not an illness
because females are more likely to seek help, and health practitioners are more likely to consider an Eating disorders are a complex medical/psychiatric eating disorder diagnosis in females. Differences in illness. Eating disorders are classified as a mental symptoms exist between males and females: females illness in the American Psychiatric Association's are more likely to focus on weight loss; males are more Diagnostic and Statistical Manual of Mental Health likely to focus on muscle mass. Although issues such as Disorders (DSM-IV), are considered to often have a altering diet to increase muscle mass, over-exercise, or biologic basis, and co-occur with other mental illness steroid misuse are not yet criteria for eating disorders, such as major depression, anxiety, or obsessive- a growing body of research indicates that these factors compulsive disorder are associated with many, but not all, males with eating Eating disorders are uncommon
Men who suffer from eating disorders tend to
They are common. Anorexia nervosa, bulimia nervosa, and binge-eating disorder are on the rise in the United States and worldwide. Among U.S. females in their Sexual preference has no correlation with developing teens and 20s, the prevalence of clinical and an eating disorder. subclinical anorexia may be as high as 15%. Anorexia nervosa ranks as the 3rd most common chronic illness Anorexia nervosa is the only serious eating
among adolescent U.S. females. Recent studies suggest disorder
that up to 7% of U.S. females have had bulimia at some time in their lives. At any given time an estimated 5% of All eating disorders can have damaging physical and the U.S. population has undiagnosed bulimia. Current psychological consequences. Although excess weight findings suggest that binge-eating disorder affects 0.7% loss is a feature of anorexia nervosa, effects of other to 4% of the general population. eating disorders can also be serious or life threatening, such as the electrolyte imbalance associated with Eating disorders are a choice
People do not choose to have eating disorders. They A person cannot die from bulimia
develop over time and require appropriate treatment to address the complex medical/psychiatric symptoms While the rate of death from bulimia nervosa is much and underlying issues. lower than that seen with anorexia nervosa, a person with bulimia can be at high risk for death and sudden Eating disorders occur only in females
death because of purging and its impact on the heart and electrolyte imbalances. Laxative use and excessive Eating disorders occur in males. Few solid statistics are exercise can increase risk of death in individuals who available on the prevalence of eating disorders in are actively bulimic. males, but the disorders are believed to be more common than currently reflected in statistics because Subclinical eating disorders are not serious
of under-diagnosis. An estimated one-fourth of anorexia diagnoses in children are in males. The Although a person may not fulfill the diagnostic criteria National Collegiate Athletic Association carried out for an eating disorder, the consequences associated studies on the incidence of eating-disordered behavior with disordered eating (e.g., frequent vomiting, among athletes in the 1990s, and reported that of those excessive exercise, anxiety) can have long-term athletes who reported having an eating disorder, 7% consequences and requires intervention. Early were male. For binge-eating disorder, preliminary intervention may also prevent progression to a full- research suggests equal prevalence among males and blown clinical eating disorder. females. Incidence in males may be underreported
NEDA TOOLKIT for Parents
Dieting is normal adolescent behavior
Eating disorders are about appearance and
While fad dieting or body image concerns have become "normal" features of adolescent life in Western Eating disorders are a mental illness and have little to cultures, dieting or frequent and/or extreme dieting do with food, eating, appearance, or beauty. This is can be a risk factor for developing an eating disorder. It indicated by the continuation of the illness long after a is especially a risk factor for young people with family person has reached his or her initial ‘target' weight. histories of eating disorders and depression, anxiety, or Eating disorders are usually related to emotional issues obsessive-compulsive disorder. A focus on health, such as control and low self-esteem and often exist as wellbeing, and healthy body image and acceptance is part of a "dual" diagnosis of major depression, anxiety, preferable. Any dieting should be monitored. or obsessive-compulsive disorder. Anorexia is "dieting gone bad"
Eating disorders are caused by unhealthy and
unrealistic images in the media
Anorexia has nothing to do with dieting. It is a life- threatening medical/psychiatric disorder. While sociocultural factors (such as the ‘thin ideal') can contribute or trigger development of eating disorders, A person with anorexia never eats at all
research has shown that the causes are multifactorial and include biologic, social, and environmental Most anorexics do eat; however, they tend to eat contributors. Not everyone who is exposed to media smaller portions, low-calorie foods, or strange food images of thin "ideal" body images develops an eating combinations. Some may eat candy bars in the morning disorder. Eating disorders such as anorexia nervosa and nothing else all day. Others may eat lettuce and have been documented in the medical literature since mustard every 2 hours or only condiments. The the 1800s, when social concepts of an ideal body shape disordered eating behaviors are very individualized. for women and men differed significantly from today— Total cessation of all food intakes is rare and would long before mass media promoted thin body images for result in death from malnutrition in a matter of weeks. women or lean muscular body images for men. Only people of high socioeconomic status get
Recovery from eating disorders is rare
Recovery can take months or years, but many people People in all socioeconomic levels have eating eventually recover after treatment. Recovery rates vary disorders. The disorders have been identified across all widely among individuals and the different eating socioeconomic groups, age groups, disorders. Early intervention with appropriate care can improve the outcome regardless of the eating disorder. Although anorexia nervosa is associated with the You can tell if a person has an eating disorder
highest death rate of all psychiatric disorders, research simply by appearance
suggests that about half of people with anorexia nervosa recover, about 20% continue to experience You can't. Anorexia may be easier to detect visually, issues with food, and about 20% die in the longer term although individuals may wear loose clothing to due to medical or psychological complications. conceal their body. Bulimia is harder to "see" because individuals often have normal weight or may even be overweight. Some people may have obvious signs, such as sudden weight loss or gain; others may not. People with an eating disorder can become very effective at hiding the signs and symptoms. Thus, eating disorders can be undetected for months, years, or a lifetime.
NEDA TOOLKIT for Parents
Eating disorders are an attempt to seek
You're not sick until you're emaciated
Only a small percentage of people with eating disorders reach the state of emaciation often portrayed The causes of eating disorders are complex and in the media. The common belief that a person is only typically include socio economic, environmental, truly ill if he or she becomes abnormally thin cultural, and biologic factors. People who experience compounds the affected individuals' perceptions of eating disorders often go to great lengths to conceal it body image and not being "good" at being "sick due to feelings of shame or a desire to persist in enough." This can interfere with seeking treatment and behavior perceived to afford the sufferer control in life. can trigger intensification of self-destructive eating Eating disorders are often symptomatic of deeper disorder behaviors. psychological issues such as low self-esteem and the desire to feel in control. The behaviors associated with Kids under age 15 are too young to have an
eating disorders may sometimes be interpreted as eating disorder
‘attention seeking"; however, they indicate that the affected person has very serious struggles and needs Eating disorders have been diagnosed in children as young as seven or eight years of age. Often the precursor behaviors are not recognized until middle to Purging is only throwing up
late teens. The average age at onset for anorexia nervosa is 17 years; the disorder rarely begins before The definition of purging is to evacuate the contents of puberty. Bulimia nervosa is usually diagnosed in mid- the stomach or bowels by any of several means. In to-late teens or early 20s, although some people do not bulimia, purging is used to compensate for excessive seek treatment until even later in life (30s or 40s). food intake. Methods of purging include vomiting, enemas and laxative abuse, insulin abuse, fasting, and You can't suffer from more than one eating
excessive exercise. Any of these behaviors can be disorder
dangerous and lead to a serious medical emergency or death. Purging by throwing up also can affect the teeth Individuals often suffer from more than one eating and esophagus because of the acidity of purged disorder at a time. Bulimarexia is a term that was coined to describe individuals who go back and forth between bulimia and anorexia. Bulimia and anorexia Purging will help lose weight
can occur independently of each other, although about half of all anorexics become bulimic. Many people Purging does not result in ridding the body of ingested suffer from an eating disorders not otherwise specified food. Half of what is consumed during a binge typically (EDNOS), which can include any combination of signs remains in the body after self-induced vomiting. Laxatives result in weight loss through fluids/water and the effect is temporary. For these reasons, many people Achieving normal weight means the anorexia
with bulimia are average or above-average weight. Weight recovery is essential to enabling a person with anorexia to participate meaningfully in further treatment, such as psychological therapy. Recovering to normal weight does not in and of itself signify a cure, because eating disorders are complex medical/psychiatric illnesses.
NEDA TOOLKIT for Parents
Eating Disorder Signs, Symptoms, and Behaviors
Dramatic weight loss Has intense fear of others without eating weight gain or being Dresses in layers to hide "fat," even though Consistently makes excuses to avoid Is preoccupied with weight, food, calories, fat situations involving experience of body grams, and dieting weight or shape, undue influence of Refuses to eat certain weight or shape on foods, progressing to excessive, rigid self-evaluation, or restrictions against exercise regimen – whole categories of food despite weather, seriousness of low (e.g., no carbohydrates, fatigue, illness, or injury, the need to "burn off " calories Postpuberty female feeling "fat" or Withdraws from usual overweight despite friends and activities Feels ineffective and becomes more isolated, withdrawn, Has strong need for constipation, abdominal pain, cold intolerance, lethargy, and excess Shows inflexible about eating in public Has limited social Denies feeling hungry Develops food rituals restrained initiative Resists maintaining (e.g., eating foods in body weight at or certain orders, excessive above a minimally chewing, rearranging normal weight for food on a plate)
NEDA TOOLKIT for Parents
In general, behaviors and Steals or hoards food Looks bloated from attitudes indicate that in strange places weight loss, dieting, and control of food are Drinks excessive Frequently diets amounts of water becoming primary concerns Shows extreme Evidence of binge eating, concern with body including disappearance of weight and shape large amounts of food in mouthwash, mints, and short periods of time or lots Has secret recurring of empty wrappers and Hides body with baggy containers indicating binge eating (eating consumption of large period of time an Maintains excessive, amount of food that rigid exercise regimen Evidence of purging is much larger than behaviors, including – despite weather, most individuals frequent trips to the fatigue, illness, or bathroom after meals, signs injury, the need to and/ or smells of vomiting, "burn off " calories circumstances); feels presence of wrappers or lack of control over packages of laxatives or Shows unusual ability to stop eating swelling of the cheeks Purges after a binge Appears uncomfortable (e.g., self-induced eating around others Has calluses on the vomiting, abuse of back of the hands and laxatives, diet pills knuckles from self- Develops food rituals (e.g., and/or diuretics, eats only a particular food induced vomiting excessive exercise, or food group [e.g., Teeth are discolored, condiments], excessive chewing, doesn't allow Body weight is foods to touch) Creates lifestyle typically within the schedules or rituals to normal weight range; Skips meals or takes small make time for binge- may be overweight portions of food at regular and-purge sessions Withdraws from usual friends and activities
NEDA TOOLKIT for Parents
Binge Eating Disorder (Compulsive Eating Disorder)
Evidence of binge eating, Steals or hoards food in Has periods of including disappearance of large amounts of food in short periods of time or lots Hides body with baggy continuous eating of empty wrappers and beyond the point of containers indicating feeling comfortably consumption of large Creates lifestyle schedules or rituals to make time for binge- Does not purge Develops food rituals (e.g., eats only a particular food or Engages in sporadic food group [e.g., condiments], Skips meals or takes fasting or repetitive excessive chewing, doesn't small portions of food allow foods to touch) at regular meals Body weight varies from normal to mild, moderate, or severe obesity
Other Eating Disorders
Any combination of the above
NEDA TOOLKIT for Parents
How to be supportive
Accuse or cause feelings of guilt Educate yourself on eating disorders; learn the jargon Invade privacy and contact the patient's doctors or others to check up behind his/her back Learn the differences between facts and myths about weight, nutrition, and exercise Demand weight changes (even if clinically necessary for health) Ask what you can do to help Insist the person eat every type of food at the Listen openly and reflectively Be patient and nonjudgmental Invite the person out for social occasions where Talk with the person in a kind way when you are the main focus is food calm and not angry, frustrated, or upset Invite the person to go clothes shopping Have compassion when the person brings up painful issues about underlying problems Make eating, food, clothes, or appearance the focus of conversation Let him/her know you only want the best for Make promises or rules you cannot or will not follow (e.g., promising not to tell anyone) Remind the person that he/she has people who care and support him/her Threaten (e.g., if you do this once more I'll…) Offer more help than you are qualified to give Suggest professional help in a gentle way Create guilt or place blame on the person Offer to go along Put timetables on recovery Be flexible and open with your support Take the person's actions personally Try to change the person's attitudes about Compliment the person's personality, successes, eating or nag about food and accomplishments Try to control the person's life Encourage all activities suggested by the treating care team, such as keeping Use scare tactics to get the person into appointments and medication compliance treatment, but do call 911 if you believe the person's condition is life-threatening Encourage social activities that don't involve food Encourage the person to buy foods that he/she will want to eat (as opposed to only "healthy" Help the person to be patient Help with the person's household chores (e.g., laundry, cleaning) as needed Remember: recovery takes time and food may always be a difficult issue Remember: recovery work is up to the affected Show care, concern, and understanding Ask how he/she is feeling Try to be a good role model Understand that the person is not looking for attention or pity
NEDA TOOLKIT for Parents
Ways to start a discussion with a loved one who might
have an eating disorder
The following guidance presumes that the situation is serious, that it is not immediately life threatening, and that it does not require emergency medical care or a call to 911.
Learn all you can about eating disorders
Explain the reasons for your concerns, without
mentioning eating behavior
Then, prepare yourself to listen with compassion and no judgment. Have a list handy of the resources to offer The person may den the situation because of overwhelming feelings, such as shame and guilt. Avoid expressing frustration with the person. Stay calm. Be Remember that even though you are
gently persistent as you go on expressing your informed about the eating disorder, only a
concerns. Ask, "Are you willing to consider the professional trained in diagnosing eating
possibility that something is wrong?" Be prepared with disorders can make a diagnosis
resources to offer if the person seems to be listening—or leave a list of resources behind for the person to Avoid using your knowledge to nag or scare the person. look at on his/her own. Expressing your concerns may The goal of a discussion should be to express your be awkward at first, but such efforts can provide the concerns about what you've observed and persuade, bridge to help the person. Even if the person does not but not force, the person to accept help. acknowledge a problem during your discussion, you have raised awareness that you are paying attention, Plan a private, uninterrupted time and place
are concerned, and want to be a support. to start a discussion
Ask if he/she is willing to explore these
Be calm, caring, and nonjudgmental. Directly express, concerns with a healthcare professional who
in a caring way, your observations and concerns about understands eating disorders
the person's behavior. Use a formula like "I am concerned about you and what's going on for you when Remember that only appropriately trained I see you [fill in the blank]." Cite specific days/times, professionals can offer appropriate options and guide situations, and behaviors that have raised your concern. treatment. Your job is to express concern and offer Share your wonder about whether the behavior might support. Ask if he/she will share the feelings that come indicate an eating disorder that requires treatment. from the behavior you've observed. Does it provide a Share what you've observed about the person's mood, sense of control, relief, satisfaction, or pleasure? Let depression, health, addiction recovery, or relationships. your loved one know there are other ways to feel Avoid words and body language that could imply better that don't take such a physical and emotional blame. Avoid discussing food and eating behavior, which can lead to power struggles. Leave those issues for the therapist to handle. Comments like "You're Remind your loved one that many people
putting on weight" or "You look thinner," may be have successfully recovered from an eating
perceived as encouraging disordered eating. disorder
Offer to help find a treatment center and offer to go along to a therapist or intake appointment. Offer encouragement and support, but, understand that in the long run, recovery is up to the person.
NEDA TOOLKIT for Parents
Take a break if your loved one continues to
deny the problem
Revisit the subject again soon, but not in a confrontational way. It's frustrating and scary to see someone you love suffering and be unable to do much about it. Remember that control is often a big issue. You cannot successfully control another person's behavior. Many patients and families interviewed about these issues discussed "control" as a key issue they had to come to terms with. If your child is older than 18, treatment cannot be forced or discussed with any health professional without written permission from your child. Even if your child is younger than age 18 years of age, he/she must be willing to acknowledge the problem and want to participate in treatment. In some cases, enlisting the support of others whom the person likes and respects may help—like a teacher, coach, guidance counselor, or other mentor who can share your concerns. Lastly, being a good support means that you
also have to take good care of yourself and
attend to the stresses you feel from the
This is important not only for your wellbeing, but also to serve as a model of healthy behavior for the person you are trying to support. Don't let your loved one's eating disorder completely rule your life.
NEDA TOOLKIT for Parents
First steps to getting help
These steps are intended for use in a nonemergency situation. If the situation is a medical or psychiatric emergency in which the patient is at risk of suicide or is medically unstable, call 911 immediately. Early detection, initial evaluation, and ongoing Medical assessment should include the following:
management can play a significant role in recovery and in preventing an eating disorder from progressing to a Physical exam including weight, height, body more severe or chronic state. The following mass index (BMI), cardiovascular and assessments are recommended as first steps to peripheral vascular function, dermatologic diagnosis and will help determine the level of care symptoms (e.g., health of skin, hair growth), needed for your family member. Receiving appropriate and evidence of self-injurious behaviors treatment at the earliest opportunity can aid in long- term recovery. The following assessments are Laboratory tests (see list below) recommended as first steps to diagnosis and will help determine the level of care your child or family Dental examination if a history of purging behaviors exists Patient assessment by a physician experienced in
Establishment of the diagnosis along with a eating disorders should include the following:
determination of eating disorder severity Patient history, including screening questions about eating patterns Laboratory Testing Used for Diagnosis of Eating
Disorders and Monitoring Response to Treatment
Medical, nutritional, and psychological and social functioning (if possible, an eating Standard Work-Up
disorder expert should assess the mental health of your child) Complete Blood Count (CBC) with differential Attitudes toward eating, exercise, and Complete Metabolic Profile: sodium, chloride, potassium, glucose, blood urea nitrogen, Family history of eating disorders or other psychiatric disorders, including alcohol and Creatinine, total protein, albumin, globulin, other substance use disorders calcium, carbon dioxide, asat, alkaline Family history of obesity Phosphates, total bilirubin Assessment of how the patient interacts with Serum magnesium people regarding food-related feelings and Thyroid Screen (T3, T4, TSH) Assessment of attitudes toward eating, Electrocardiogram (ECG) exercise, and appearance
NEDA TOOLKIT for Parents
Level of Care
If uncertain of diagnosis: Once a diagnosis is made, a level of care will be recommended based on the physical, psychiatric, and Erythrocyte sedimentation rate laboratory findings. Pursue the level of care that is recommended for your child. This may include Radiographic studies (computed tomography inpatient, outpatient, intensive outpatient, partial or magnetic resonance imaging of the brain or hospital, or residential treatment. upper or lower gastrointestinal system) If patient has been amenorrheic for 6 months: Urine pregnancy, luteinizing and follicle- stimulating hormone, and prolactin tests If patient is 15% or more below ideal body weight Complement 3 (C3) 24 Creatinine Clearance If patient is 15% or more below IBW lasting 6 months or longer at any time during course of eating disorder: Dual Energy X-Ray Absorptiometry (DEXA) to assess bone mineral density Estradiol Level (or testosterone in male) If patient is 20% or more below IBW or any neurologic If patient is 20% or more below IBW or sign of mitral Echocardiogram If patient is 30% or more below IBW: Skin Testing for Immune Functioning
NEDA TOOLKIT for Parents
Advice from other parents: What to expect and how to
Well-meaning people who have no idea about what
Can I give you some advice?
your family is going through can sometimes say insensitive things. Others who need to be part of the I appreciate your thoughtfulness and desire to help, care and communication plan—like schools, coaches, and it's good to know I have your support. I'd really other family members—need to know certain things. prefer to rely on the advice of our care team right Avoid responding to intrusive questions that are none now. We are getting lots of input from lots of of the asker's business. On the other hand, some directions and it's really a little overwhelming. Thanks questions provide an opportunity to educate and enlighten if you feel so inclined. Some days you may just feel too drained to respond to questions—let the Why do you think he/she has an eating
asker know it's not a great day to be asking questions. Parents of adolescents and young adults with an disorder?
eating disorder offer the advice below about possible No one knows exactly what causes eating disorders. ways to respond to questions, based on their own Right now I'm concerned with supporting my child through treatment and not focusing on the how and whys. Aren't eating disorders just the new disease
fad? I hear about them all over the media.
How can he/she be sick? He/she doesn't look
Not at all. An eating disorder is not a "fad" or a "phase." People don't just "catch" it and get over it. Individuals with bulimia nervosa typically are within Eating disorders are complex and devastating the normal weight range, and some may be conditions that can have serious consequences for underweight or overweight. Individuals with anorexia physical and emotional health, quality of life, and may not look it outwardly until the disorder becomes so severe that it is life threatening. An eating disorder? That's not really an
illness is it? It's just dieting gone bad
Why did he/she tell a teacher [coach, nurse,
[anorexia]. It's just an excuse to get sympathy
counselor—any other adult] first?
for being overweight [bulimia; binge eating
Kids often are hesitant to tell their parents something they feel really bad about. We're happy and relieved It's a recognized and real illness, identified by the that he/she at least told someone who then told us so National Institute of Mental Health. It's also serious – we can get him/her the care he/she needs. anorexia is the largest cause of death among teenage What are you doing to help your child?
He's/she's only in middle school. Isn't that too
We're listening to our child, educating ourselves about young to have an eating disorder?
it, and getting the best, most comprehensive care possible to address all the aspects of a really complex No. Eating disorders are diagnosed in people as young illness. It's exhausting.
NEDA TOOLKIT for Parents
Can't you just make her eat?
Why didn't you do anything sooner?
Like many behavioral problems, it is hard to make The scariest thing about eating disorders is how changes unless there is a consistent, persistent, and secretive they are and how well a person can hide the clinically informed way of going about it. Although condition. Hindsight is 20/20. Had we known the signs you can't just "make them eat," you can, as parents and symptoms back then that we know now, we might working with a professional who supports your efforts, have suspected it sooner and would have sought help find effective ways to disrupt starvation and over right away. Even then, the person has to be willing to exercise. In fact, studies in the UK and US suggest that accept treatment after the initial medical crisis is putting parents in charge of weight restoration is over—and the nature of the illness makes that hard. effective for most adolescents with anorexia nervosa. What can I do to help?
Will he/she be cured after treatment?
Thanks very much for asking. Life has been very We're hopeful for a full recovery over time. It can be a draining lately just trying to make sure my child is very long haul. Getting the right treatment is key and getting the care he/she needs. It leaves little time for that's a significant part of what I'm trying to the mundane. I keep my "to-do" list handy. (Pull out your list.) If you're serious, I could use help with (assign a task with a date and time that it's needed). Is there a chance that he/she could die?
Why aren't you letting me help you?
Eating disorders can be life-threatening. They affect a person's physical and emotional health. Some people Our child's illness is serious and I'm relying on have died from them. It's very scary, but we are professional help to treat his/her condition. The help I hopeful and doing everything we can to make sure need from family and friends is your continued he/she gets care that will prevent that. support and ongoing friendship. I appreciate your asking. If I think of something our family needs that Do you want us to help the child make-up
you can do for us, I'll let you know. work (flexible schedule) or should we leave
him/her back a grade? Do you want us to
Why didn't you tell me about this earlier?
provide a tutor?
It's private and our focus initially was on educating Let's schedule a meeting with my child's therapist and ourselves and getting our child the best care. We the principal, key teachers, nurse, and school weren't even sure it would be helpful to share with psychologist to create the education plan. others. So when we were ready, we decided that now is the right time for us to share this with friends and What kind of support do you want the school
How are you coping with this?
Have a specific list from the treatment team: Mealtime Thanks for asking. It's very draining and very stressful support; excuse from physical education or other on our entire family. We really appreciate the activities as needed; communication expected from understanding and support coming from friends. school and with whom.
NEDA TOOLKIT for Parents
Can I go with you to the support group?
Can't you just make him/her go to the
The response depends on the context: If the person is being nosy and is not close to the family or patient, it The use of hospitalization to treat anorexia nervosa may be inappropriate to attend a support group. In varies from country to country. In the US, that case, here is a response: The support group is hospitalization for medical complications for intended for people who are closest to the situation. If adolescents with AN is a common intervention. you want to learn more about eating disorders, that's Depending on individual state law, a parent may be terrific. Community information seminars are given able to admit their minor children for medical locally sometimes on eating disorders and that might hospitalization against the minor's wishes. Laws be a more comfortable setting—these are often governing psychiatric hospitalization of minors also offered through local hospital outreach programs or vary from state to state, but in many, parents cannot eating disorder advocacy groups. require their minor children to stay in a psychiatric facility if a judge determines they are not a danger to Is he/she going to have to be hospitalized?
themselves or others, or cannot care for themselves. That depends on the progress he/she makes as an How long will he/she be in treatment?
outpatient. We'll just have to see how it goes. Hospitalization is sometimes necessary with this Everyone's treatment process and progress is different. illness because of the serious medical consequences it It could be months; it could be years. Why are you going to family therapy?
Why is he/she returning to the hospital
We're hoping to better understand the problem, our role in the recovery process, how best to encourage Recovery is a hard and not always predictable road. A and support our son/daughter, and how to help few steps forward and a step back. Sometimes events manage the symptoms. or stresses can trigger a relapse. But keeping a positive outlook is important and knowing that many How long will he/she be in recovery?
people recover keeps us going. Don't put timetables on recovery. Every patient Why can't you stop this destructive behavior?
progresses at his/ her own speed. Be patient with therapy, finding the right medication, and the process Recovery is ultimately up to the patient. The care of the entire treatment plan. team and all of us in the family are doing everything we can to give her/him the care and support needed for recovery. But no one can force or speed up Is your child on any medications that I should
treatment and recovery. be aware of? What are the side effects I
should be looking out for?
How much school is your child going to miss?
The school and coaches and anyone your child spends That isn't entirely clear right now, but based on the significant time with should be given this information treatment team's recommendation for the near term, in case of an adverse event. Be prepared with copies here is what we know… of a sheet that summarizes medication names, dosing regimen, and the prescribing physician's contact
NEDA TOOLKIT for Parents
Why parent-school communications may be difficult:
Regulatory constraints and confidentiality issues
This information is intended to help both parents and school staff understand each other's perspectives about
communication and the factors that affect their communications.
Parents of children with an eating disorder (diagnosed Teachers explain that sometimes the student considers or undiagnosed) sometimes express frustration about the problem to be the parent, so contacting the parent what they perceive as a lack of communication about about a concern can make a student's problem worse their child's behavior from school teachers, coaches, in the students' eyes. Conversely, a student can also guidance counselors, and other school administrative prohibit a teacher from talking with parents about the personnel. From the parents' perspective, feelings have teachers' concerns without evidence from direct been expressed that "my child is in school and at observations of behavior. school activities more waking hours a day than they are home. Why didn't the school staff notice something The following link presents the position statement from was wrong? Why don't they contact us about our child the professional association of school counselors: to tell us what they think?" It states the professional From a teacher's perspective, feelings have been responsibilities of school counselors, emphasizing expressed that "my hands are tied by laws and rights to privacy, defining the meaning of regulations about what and how we are allowed to confidentiality in a school setting, and describing the communicate concerns to parents. Also, it's often the role of the school counselor. The position statement's case that a given teacher sees a student less than an summary is as follows: hour a day in a class full of kids. So no school staff person is seeing the child for a prolonged period. Kids "A counseling relationship requires an atmosphere of
are good at hiding things when they want to. " trust and confidence between student and counselor. A
student has the right to privacy and confidentiality. The
While rules vary from state to state, the Position responsibility to protect confidentiality extends to the
Statement on Confidentiality from The American student's parent or guardian and staff in confidential
School Counselor Association may help both sides relationships. Professional school counselors must
better understand why communications between adhere to P.L. 93-380."
family members and school personnel may be difficult at times. The rationale behind this position is that an atmosphere of trust is important to the counseling relationship. In addition, schools may be bound by strict protocols generated by state regulations about how teachers and staff are required to channel observations and concerns. For example, school districts in a state may be required to have a "student assistance program" team to handle student nonacademic issues. Teacher concerns are submitted on a standard form to the team that then meets to develop a "student action plan." Privacy laws can prohibit a teacher from discussing their concerns with a student without parent permission.
NEDA TOOLKIT for Parents
Useful online resources for eating disorders
Academy for Eating Disorders
Eating Disorders Coalition for Research,
Policy & Action
An organization for healthcare professionals in the eating disorders field. The academy promotes A coalition with representatives of various eating research, treatment, and prevention of eating disorder groups. This organization focuses on lobbying disorders. Their Web site lists current clinical trials and the federal government to recognize eating disorders general information about eating disorders. as a public health priority. A Chance to Heal Foundation
ECRI Institute Bulimia Resource Guide for
This foundation was established to provide financial assistance to individuals with eating disorders who might not otherwise receive treatment or reach full ECRI Institute, an independent, nonprofit healthcare recovery due to their financial circumstances. The research organization, researching the best ways to organization's mission also focuses on increasing improve patient care. ECRI Institute produces public awareness and education about eating evidence-based information about healthcare for disorders and advocating for change to improve patients and families, including the Web site listed access to quality care for eating disorders. above. The Institute is designated an Evidence-based Practice Center by the U.S. Agency for Healthcare Anna Westin Foundation
Research and Quality and a Collaborating Center of the World Health Organization. Maudsley Parents
This organization was founded in memory of a child who died from bulimia complications. It performs advocacy, education, and speakers, and provides resources about eating disorders, treatment, and Maudsley Parents is an independent, nonprofit, navigating the health insurance system. The volunteer organization of parents. The Maudsley Anna Westin Foundation and Methodist Hospital approach is an evidence-based treatment for eating Eating Disorders Institute partnered to establish a disorders. In Maudsley treatment, parents play a key long-term residential eating disorder treatment role in helping their child recover. program for women in Minnesota. National Alliance on Mental Illness
Anorexia Nervosa and Related Eating
A national grassroots mental health organization dedicated to improving the lives of people living with serious mental illness and their families. This organization provides information about anorexia, bulimia, binge-eating disorder, and other lesser-known food and weight disorders, including self-help tips and information about recovery and
NEDA TOOLKIT for Parents
National Association of Anorexia Nervosa
and Associated Disorders (ANAD)
This Web site gives detailed information on most aspects of eating disorders: defining them, preventing This organization seeks to alleviate the problems of them, finding treatments, and paying for recovery. eating disorders by educating the public and Useful links to related articles and stories are healthcare professionals, encouraging research, and sharing resources on all aspects of these disorders. ANAD's Web site includes information on finding support groups, referrals, treatment centers, advocacy, Voices not Bodies
and background on eating disorders. National Eating Disorders Association
An all-volunteer organization dedicated to eating disorders awareness and prevention. This organization is the largest non-profit organization in the United States dedicated to supporting those affected by eating disorders and being a catalyst for prevention, cures and access to quality care. NEDA develops support programs for a wide range of audiences, publishes and distributes educational materials, operates a toll-free eating disorders Information and Referral Helpline which links callers to vital information and treatment. The searchable database of treatment providers throughout the U.S. and Canada is also available on the website. Eating Disorder Referral and Information
This is a sponsored site with a large archive of information on eating disorders and referral information to treatment centers.
These Public Broadcasting System web pages are based on a NOVA television program documentary. The site provides information on eating disorders with personal stories and links.
NEDA TOOLKIT for Parents
NEDA TOOLKIT for Parents
Treatments available for eating disorders
Standard treatments include medications (prescription alleviate depression, but may also play a role in drugs), various psychotherapies, nutrition therapy, making an individual feel full and possibly prevent other nondrug therapies, and supportive or adjunct binge eating in patients with bulimia or binge eating interventions such as yoga, art, massage, and disorder. FDA has issued a warning and labeling to movement therapy. Some novel treatments are prevent prescription of one particular antidepressant currently under research, such as implantation of a for eating disorders Wellbutrin, which is available in device called a vagus nerve stimulator implanted at several brand and generic formulations— because it the base of the neck. This stimulator is currently in use leads to higher risk of epileptic seizures in these to treat some forms of depression, and it is under research for treating obesity. Psychological Therapy
The most commonly used treatments—psychotherapy and medication—are delivered at various levels of Several types of psychotherapy are used in individual inpatient and outpatient care, and in various settings and group settings and with families. Patients must be depending on the severity of the illness and the medically stable to be able to participate meaningfully treatment plan that has been developed for a in any type of psychological therapy. Thus, a patient particular patient. Bulimia nervosa and binge eating who has required hospitalization for refeeding and to disorders can often be treated on an outpatient basis, stabilize his/her medical condition will ordinarily not although more severe cases may require inpatient or be able to participate in therapy until after he/she has residential treatment. The levels of care and types of recovered sufficiently to enable cognitive function to treatment centers are discussed in separate documents return to normal. in the tool kit. The treatment plan should be developed by a multidisciplinary team in consultation with the A given psychologist or psychiatrist may use several patient, and family members as deemed appropriate by different approaches tailored to the situation. The the patient and his/her team. types of psychotherapy used are listed here in a chart and defined below. Cognitive behavior therapy (CBT) Medication
and behavior therapy (BT) have been used for many years as first-line treatment, and they are the most- Biochemical abnormalities in the brain and body have used types of psychotherapy for bulimia. CBT involves been associated with eating disorders. Many types of three overlapping phases. The first phase focuses on prescription drugs have been used in treatment of helping people to resist the urge to engage in the cycle eating disorders; however, only one prescription drug of behavior by educating them about the dangers. The (fluoxetine) actually has a labeled indication for one second phase introduces procedures to reduce dietary eating disorder, bulimia nervosa. (This means that the restraint and increase eating regularity. The last phase manufacturer requested permission from the U.S. Food involves teaching people relapse-prevention strategies and Drug Administration (FDA) to market the drug to help prepare them for possible setbacks. A course of specifically for treatment of bulimia nervosa and that individual CBT for bulimia nervosa usually involves 16- FDA approved this request based on the evidence the to 20-hour-long sessions over a period of 4 to 5 months. manufacturer provided about the drug's efficacy for BT uses principles of learning to increase the frequency bulimia nervosa.) of desired behavior and decrease the frequency of problem behavior. When used to treat bulimia nervosa, Most prescription drug therapy used for treatment of BT focuses on teaching relaxation techniques and the disorder is aimed at alleviating major depression, coping strategies that individuals can use instead of anxiety, or obsessive-compulsive disorder (OCD), which binge eating and purging or excessive exercise or often coexist with an eating disorder. Some prescription drug therapies are intended to make individuals feel full to try to prevent binge eating. Self-help groups are listed here because they may be Generic and brand names of prescription drugs that the only option available to people who have no have been used to treat eating disorders are listed in insurance. However, self-help groups can also have the chart. Some of these antidepressants also can exert negative effects on a person with an eating disorder if other effects. Selective serotonin reuptake inhibitors they are not well-moderated by a trained professional.
NEDA TOOLKIT for Parents
Medication names: Generic (Brand)
Naltrexone (Nalorex) (Intended to alleviate Amitriptyline (Elavil) addictive behaviors such as the addictive drives to Clomipramine (Anafranil) eat or binge eat.) Desipramine (Norpramin, Pertofrane) Imipramine (Janimine, Tofranil) Antiemetic
Nortriptyline (Aventyl, Pamelor) Modified Cyclic Antidepressants
Ondansetron (Zofran) (Used to give sensation of Trazodone (Desyrel) satiety and fullness.) Selective Serotonin Reuptake Inhibitors (SSRIS)
Citalopram (Celexa) Escitalopram (Lexapro) Topiramate (Topamax) (May help regulate feeding Fluoxetine (Prozac, Sarafem) Fluvoxamine (Luvox) Paroxetine (Paxil) Sertraline (Zoloft) Aminoketone
Lithium carbonate (Carbolith, Cibalith-S, Duralith, Bupropion (Wellbutrin, Zyban): Now Eskalith, Lithane, Lithizine, Lithobid, Lithonate, contraindicated for treatment of eating disorders Lithotabs) (Used for patients who also have because of several reports of drug-related bipolar disorder, but may be contraindicated for patients with substantial purging.) Monoamine Oxidase Inhibitors
Brofaromine (Consonar) Isocarboxazide (Benazide) Moclobemide (Manerix) Phenelzine (Nardil) Tranylcipromine (Parnate) Serotonin And Noradepinephrine Reuptake Inhibitor
Duloxetine (Cymbalta) Venlafaxine (Effexor) Mianserin (Bolvidon) Mirtazapine (Remeron)
NEDA TOOLKIT for Parents
Other Adjunctive and Alternative Treatments
Creative Art Therapies
Behavior therapy Exposure with response prevention Movement Therapy Hypnobehavior therapy Cognitive therapy Cognitive analytic therapy Nutritional Counseling
Cognitive behavior therapy (all forms) Individual, group, family, and mealtime-support Cognitive remediation therapies Scheme-based cognitive therapy Self-guided cognitive behavioral therapy Other Therapies
Dialectical behavior therapy Although little research exists to support the use of Guided imagery the following interventions, individual patients have Psychodynamic therapy sometimes found some of these approaches to be Self psychology useful, particularly as adjuncts to conventional Psychoanalysis treatments. However, these approaches should not be Interpersonal psychotherapy used in place of evidence-based treatments where the Motivational enhancement therapy latter are available. Psychoeducation Supportive therapy Emailing for support or coaching Family therapy
Eye movement desensitization Involving family members in psychotherapy sessions with and without the patient Group psychotherapy
Cognitive behavioral therapy Psychodynamic Relaxation training Psychoeducational Interpersonal Self-Help groups
ANAD (Anorexia Nervosa and Associated 12-step approaches Eating Disorders Anonymous Web-based on-line programs
NEDA TOOLKIT for Parents
Antidepressants Prescription drugs used for treatment
Cognitive Remediation Therapy (CRT) Since patients
of eating disorders and aimed at alleviating major with anorexia nervosa (AN) have a tendency to get depression, anxiety, or obsessive-compulsive disorder, trapped in detail rather than seeing the big picture, and which often coexist with an eating disorder. have difficulty shifting thinking among perspectives, this newly investigated brief psychotherapeutic Behavior Therapy (BT) A type of psychotherapy that
approach targets these specific thinking styles and uses principles of learning to increase the frequency of their role in the development and maintenance of an desired behaviors and/or decrease the frequency of eating disorder. Currently, it's usually conducted side problem behaviors. Subtypes of BT include dialectical by side with other forms of psychotherapies. behavior therapy (DBT), exposure and response prevention (ERP), and hypnobehavioral therapy. Dialectical Behavior Therapy (DBT) A type of
behavioral therapy that views emotional deregulation Cognitive Therapy (CT) A type of psychotherapeutic
as the core problem in eating disorders. It involves treatment that attempts to change a patient's feelings teaching people new skills to regulate negative and behaviors by changing the way the patient thinks emotions and replace dysfunctional behavior. (See also about or perceives his/her significant life experiences. Behavioral Therapy.) Subtypes include cognitive analytic therapy and cognitive orientation therapy. Equine/Animal-assisted Therapy A treatment program
in which people interact with horses and become Cognitive Analytic Therapy (CAT) A type of cognitive
aware of their own emotional states through the therapy that focuses its attention on discovering how a reactions of the horse to their behavior. patient's problems have evolved and how the procedures the patient has devised to cope with them Exercise Therapy An individualized exercise plan that is
may be ineffective or even harmful. CAT is designed to written by a doctor or rehabilitation specialist, such as enable people to gain an understanding of how the a clinical exercise physiologist, physical therapist, or difficulties they experience may be made worse by nurse. The plan takes into account an individual's their habitual coping mechanisms. Problems are current medical condition and provides advice for what understood in the light of a person's personal history type of exercise to perform, how hard to exercise, how and life experiences. The focus is on recognizing how long, and how many times per week. these coping procedures originated and how they can Exposure with Response Prevention (ERP) A type of
behavior therapy strategy that is based on the theory Cognitive Behavior Therapy (CBT) CBT is a goal-
that purging serves to decrease the anxiety associated oriented, short-term treatment that addresses the with eating. Purging is therefore negatively reinforced psychological, familial, and societal factors associated via anxiety reduction. The goal of ERP is to modify the with eating disorders. Therapy is centered on the association between anxiety and purging by preventing principle that there are both behavioral and attitudinal purging following eating until the anxiety associated disturbances regarding eating, weight, and shape. with eating subsides.(See also Behavioral Therapy.) Cognitive Orientation Therapy (COT) A type of
Expressive Therapy A nondrug, nonpsychotherapy form
cognitive therapy that uses a systematic procedure to of treatment that uses the performing and/or visual understand the meaning of a patient's behavior by arts to help people express their thoughts and exploring certain themes such as aggression and emotions. Whether through dance, movement, art, avoidance. The procedure for modifying behavior then drama, drawing, painting, etc., expressive therapy focuses on systematically changing the patient's beliefs provides an opportunity for communication that might related to the themes, not beliefs that refer directly to otherwise remain repressed. eating behavior.
NEDA TOOLKIT for Parents
Eye Movement Desensitization and Reprocessing
Mandometer Therapy Treatment program for eating
(EMDR) A nondrug and nonpsychotherapy form of
disorders based on the idea that psychiatric symptoms treatment in which a therapist waves his or her fingers of people with eating disorders emerge as a result of back and forth in front of the patient's eyes, and the poor nutrition and are not a cause of the eating patient tracks the movements while also focusing on a disorder. A mandometer is a computer that measures traumatic event. It is thought that the act of tracking food intake and is used to determine a course of while concentrating allows a different level of processing to occur in the brain so that the patient can review the event more calmly or more completely than Massage Therapy A generic term for any of a number of
various types of therapeutic touch in which the practitioner massages, applies pressure to, or Family Therapy A form of psychotherapy that involves
manipulates muscles, certain points on the body, or members of an immediate or extended family. Some other soft tissues to improve health and well-being. forms of family therapy are based on behavioral or Massage therapy is thought to relieve anxiety and psychodynamic principles; the most common form is depression in patients with eating disorders. based on family systems theory. This approach regards the family as the unit of treatment and emphasizes Maudsley Method A family-centered treatment
factors such as relationships and communication program with three distinct phases. During the first patterns. With eating disorders, the focus is on the phase parents are placed in charge of the child's eating eating disorder and how the disorder affects family patterns in hopes to break the cycle of not eating, or of relationships. Family therapies may also be binge eating and purging. The second phase begins educational and behavioral in approach. once the child's refeeding and eating is under control with a goal of returning independent eating to the Hypnobehavioral Therapy A type of behavioral therapy
child. The goal of the third and final phase is to address that uses a combination of behavioral techniques such the broader concerns of the child's development. as self-monitoring to change maladaptive eating disorders and hypnotic techniques intended to Mealtime Support Therapy Treatment program
reinforce and encourage behavior change. developed to help patients with eating disorders eat healthfully and with less emotional upset. Interpersonal Therapy (IPT) IPT (also called
interpersonal psychotherapy) is designed to help Motivational Enhancement Therapy (MET) A treatment
people with eating disorders identify and address their based on a model of change, with focus on the stages interpersonal problems, specifically those involving of change. Stages of change represent constellations of grief, interpersonal role conflicts, role transitions, and intentions and behaviors through which individuals interpersonal deficits. In this therapy, no emphasis is pass as they move from having a problem to doing placed directly on modifying eating habits. Instead, the something to resolve it. The stages of change move expectation is that the therapy enables people to from "pre-contemplation," in which individuals show no change as their interpersonal functioning improves. IPT intention of changing, to the "action" stage, in which usually involves 16 to 20 hour-long, one-on-one they are actively engaged in overcoming their problem. treatment sessions over a period of 4 to 5 months. Transition from one stage to the next is sequential, but not linear. The aim of MET is to help individuals move Light therapy (also called phototherapy) Treatment
from earlier stages into the action stage using cognitive that involves regular use of a certain spectrum of lights and emotional strategies. in a light panel or light screen that bathes the person in that light. Light therapy is also used to treat conditions Movement/Dance Therapy
such as seasonal affective disorder (seasonal The psychotherapeutic use of movement as a process that furthers the emotional, cognitive, social, and physical integration of the individual, according to the American Dance Therapy Association.
NEDA TOOLKIT for Parents
Nutritional Therapy Therapy that provides patients
Psychotherapy The treatment of mental and emotional
with information on the effects of eating disorders, disorders through the use of psychological techniques techniques to avoid binge eating, and advice about designed to encourage communication of conflicts and making meals and eating. For example, the goals of insight into problems, with the goal being symptom nutrition therapy for individuals with bulimia nervosa relief, changes in behavior leading to improved social are to help individuals maintain blood sugar levels, and vocational functioning, and personality growth. help individuals maintain a diet that provides them with enough nutrients, and help restore overall Psychoeducational Therapy A treatment intended to
physical health. teach people about their problem, how to treat it, and how to recognize signs of relapse so that they can get Opioid Antagonists A type of drug therapy that
necessary treatment before their difficulty worsens or interferes with the brain's opioid receptors and is recurs. Family psychoeducation includes teaching sometimes used to treat eating disorders. coping strategies and problem-solving skills to families, friends, and/or caregivers to help them deal more Pharmacotherapy Treatment of a disease or condition
effectively with the individual. using clinician-prescribed drugs. Self-guided Cognitive Behavior Therapy A modified
Progressive Muscle Relaxation A deep relaxation
form of cognitive behavior therapy in which a technique based on the simple practice of tensing or treatment manual is provided for people to proceed tightening one muscle group at a time followed by a with treatment on their own, or with support from a relaxation phase with release of the tension. This nonprofessional. Guided self-help usually implies that technique has been purported to reduce symptoms the support person may or may not have some associated with night eating syndrome. professional training, but is usually not a specialist in eating disorders. The important characteristics of the Psychoanalysis An intensive, nondirective form of
self-help approach are the use of a highly structured psychodynamic therapy in which the focus of and detailed manual-based CBT, with guidance as to treatment is exploration of a person's mind and the appropriateness of self-help, and advice on where habitual thought patterns. It is insight oriented, to seek additional help. meaning that the goal of treatment is for the patient to increase understanding of the sources of his/her inner Self Psychology A type of psychoanalysis that views
conflicts and emotional problems. anorexia and bulimia as specific cases of pathology of the self. According to this viewpoint, people with eating Psychodrama A method of psychotherapy in which
disorders cannot rely on human beings to fulfill their patients enact the relevant events in their lives instead self-object needs (e.g., regulation of self-esteem, of simply talking about them. calming, soothing, vitalizing). Instead, they rely on food (its consumption or avoidance) to fulfill these needs. Psychodynamic Therapy Psychodynamic theory views
Self psychological therapy involves helping people the human personality as developing from interactions with eating disorders give up their pathologic between conscious and unconscious mental processes. preference for food as a self-object and begin to rely The purpose of all forms of psychodynamic treatment on human beings as self-objects, beginning with their is to bring unconscious thoughts, emotions and memories into full consciousness so that the patient can gain more control over his/her life. Supportive Therapy Psychotherapy that focuses on the
management and resolution of current difficulties and Psychodynamic Group Therapy Psychodynamic groups
life decisions using the patient's strengths and are based on the same principles as individual available resources. psychodynamic therapy and aim to help people with past difficulties, relationships, and trauma, as well as Telephone Therapy A type of psychotherapy provided
current problems. The groups are typically composed over the telephone by a trained professional. of eight members plus one or two therapists.
NEDA TOOLKIT for Parents
The Evidence on What Treatment Works:
Clinical Guidelines and Evidence Reports
If you want access to the same documents that clinicians use to guide their treatment decisions, and if you want to
know what the available evidence says on what works for treatment of eating disorders, you want to look at
published clinical practice guidelines and medical journal articles called systematic reviews. The information in this document provides links to that information so you can look it over and take it with you to discuss the care plan with the physicians and others who will treat your family member. This document discusses two types of evidence-based treatments for bulimia eating disorders in general; the information used by clinicians in determining other systematic review did not pool data for analysis appropriate care for eating disorders: clinical practice from groups of studies, but rather looked at individual guidelines and systematic reviews. We define below studies on their own. Both systematic reviews were what an evidence-based clinical guideline and a performed by very reputable research organizations: systematic review are and provide links to the two U.S. Evidence-based Practice Centers of the U.S. documents. If you review this information before Agency for Healthcare Research and Quality (AHRQ). meeting with the care team, it can help you have Links to the Executive Summary and full Evidence informed discussions about care plans with your loved Reports are provided. one's care team. Bulimia Nervosa: Efficacy of Available
Systematic Reviews of Clinical Studies
A systematic review is a comprehensive review and A Systematic Review conducted by ECRI Institute analysis of data from the available published clinical Evidence-based Practice Center ECRI Institute's studies on existing methods of diagnosing and treating approach was unique in producing this evidence report a disorder. Researchers start out with key clinical and the bulimia nervosa resource guide. The focus of questions that they seek to answer, and then they the work was driven by an external advisory committee perform a comprehensive search for published data to of patients and family members affected by bulimia analyze to address the questions. Thus, the data for nervosa, clinicians and specialists from leading eating analysis are collected from as many published clinical disorder treatment centers that treat eating disorders, studies as there are to address the question. The data scientists who conduct research on eating disorders, are then pooled together statistically where possible health insurance representatives, and others who and analyzed to figure out how well each treatment affect patient care. ECRI Institute gratefully works and for whom it works best. Sometimes sufficient acknowledges the support of The Hilda & Preston Davis data are not available to conclusively answer a Foundation, which provided major funding for this question. Knowing where the holes in the research are evidence report and the family resource guide and is important, because that knowledge will help in Web site that emerged from the research. The planning new research that hopefully will answer the approach was unique because of the intensive questions about "what works?" Also, it's important to involvement of families and recovering patients in understand that some treatments may not have formulating the key questions and reviewing the family evidence available about how well they work. and patient information before publication. Therefore, your decisions about treatment may have to be based on considerations other than conclusive Link to the Summary: clinical evidence. A lot more research is needed about what works best in the field of eating disorders. That said, some information is available about how well some types of treatment work. Keep in mind that a lack Link to the Full Report: of evidence doesn't mean that a treatment does not work—it just means no evidence is available to be able to conclude whether or not it works. Following this section are links to two systematic reviews: one pertains to bulimia nervosa and pooled data together where possible on all the different
NEDA TOOLKIT for Parents
Management of Eating Disorders
A systematic review conducted by RTI
Clinical Practice Guidelines
International, University of North Carolina at
Chapel Hill Evidence-based Practice Center
A practice guideline is defined as a "systematically developed statement to assist practitioner and patient This systematic review of the literature focused on key decisions about appropriate healthcare for specific questions concerning anorexia nervosa, bulimia clinical conditions." The following four clinical practice nervosa, and eating disorders not otherwise specified guidelines have been published by reputable medical (i.e., especially binge eating disorder) to address organizations and are available to the medical questions posed by the American Psychiatric treatment team that is providing care to your child. We Association and Laureate Psychiatric Clinic and also provide summaries of these guidelines below. Hospital through AHRQ. Funding was provided by These guidelines were identified from the National AHRQ, the Office of Research on Women's Health at Guideline Clearinghouse (www.guideline.gov) the National Institutes of Health, and the Health Resources and Services Administration. We received Identifying and treating eating disorders. American guidance and input from a Technical Expert Panel. This Academy of Pediatrics. report was also published as four separate articles in the International Journal of Eating Disorders in 2007. Practice guideline for the treatment of patients Link to the Executive Summary: with eating disorders. American Psychiatric Link to the Full Report: Finnish Medical Society Duodecim. Eating disorders among children and adolescents. Berkman, N.D., C.M. Bulik, and K.N. Lohr. (2007). U.K. National Collaborating Centre for Mental Outcomes of Eating Disorders: A Systematic Review of Health (National Institute for Health and Clinical the Literature. International Journal of Eating Excellence [NICE]). Eating disorders. Core Disorders, 40(4): 293-309 interventions in the treatment and management of Brownley, K.A., N.D. Berkman, J.A. Sedway, K.N. Lohr, anorexia nervosa, bulimia nervosa and related and C.M. Bulik. (2007). Binge Eating Disorder Treatment: eating disorders. A Systematic Review of Randomized Controlled Trials. International Journal of Eating Disorders, 40(4):337-348 Bulik, C.M., N.D. Berkman, K.A. Brownley, J.A. Sedway, and K.N. Lohr (2007). Anorexia Nervosa Treatment: A Systematic Review of Randomized Controlled Trials. International Journal of Eating Disorders, 40(4): 310- Shapiro, J.R., N.D. Berkman, K.A. Brownley, J.A. Sedway, K.N. Lohr, and C.M. Bulik (2007). Bulimia Nervosa Treatment: A Systematic Review of Randomized Controlled Trials. International Journal of Eating Disorders, 40(4): 321-336
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Eating disorders among children and adolescents
From the Finnish Medical Society Duodecim
Currently, eating disorders are considered to be Bibliographic Source
multifarious. Genetic and sociocultural factors and also individual dynamics all affect eating Finnish Medical Society Duodecim. Eating disorders among children and adolescents. In: The typical age of onset is adolescence, when the EBM Guidelines. Evidence- Based Medicine body changes and grows. [Internet]. Helsinki, Finland: Wiley Interscience. Anorexia nervosa typically emerges between 14 John Wiley & Sons; 2007 Mar 28 [Various]. and 16 years of age or around the age of 18 years. Bulimia appears typically at the age of 19 to 20 years. Major Recommendations
Eating disorders are 10 to 15 times more common among girls than boys. The levels of evidence [A-D] supporting the Every 150th girl between the ages of 14 and 16 recommendations are defined at the end of the "Major years suffers from anorexia nervosa. Recommendations" field. There is no epidemiologic data on the occurrence of bulimia, but it is considered to be more Objectives
common than anorexia nervosa. Remember that eating disorders are very common Diagnostic Criteria for Anorexia Nervosa
among adolescent girls, and especially bulimic disorders are encountered in boys as well. The patient does not want to maintain his/her One must remember to look for signs of an eating normal body weight. disorder; patients seldom report it themselves. The patient's weight is at least 15% below that The diagnosis and planning of treatment are the expected for age and height. responsibility of special personnel. The patient's body image is distorted. The patient is afraid of gaining weight. Basic Rules
There is no other sickness that would explain the An eating disorder refers to states in which food and nourishment have an instrumental and Diagnostic Criteria of Bulimia Nervosa
manipulative role: food has become a way to regulate the appearance of the body. Desire to be thin, phobic fear of gaining weight. The spectrum of eating disorders is vast. The most Persistent preoccupation with eating and an common disorders are anorexia nervosa and irresistible urge or compulsive need to eat. bulimia nervosa. In addition, incomplete clinical Episodes of binge eating (at least twice a week); pictures and simple binge eating have become control over eating is lost. After the episode of binge eating, the person Recently the international trend has been to put attempts to eliminate the ingested food (e.g., by more emphasis on early reaction to the symptoms. self-induced vomiting and by abuse of purgatives Even small children can have different kinds of eating disorders that relate to difficulties in the relationships between the child and his/her
NEDA TOOLKIT for Parents
Anorexia nervosa generally starts gradually. In anorexia nervosa: Losing weight can either be very rapid or very slow. Generally the patients continue to go to Blood glucose levels on the lower border school; they go on with their hobbies and feel great about themselves. Therefore, the families are usually surprised to find that their child suffers from malnutrition. Increased serum amylase A screening questionnaire is helpful in the assessment of patients with suspected eating Differential Diagnosis
disorders (each positive answer gives one point; two or more points suggest an eating disorder). Severe somatic diseases, for example, brain Do you try to vomit if you feel Psychiatric diseases — severe depression, unpleasantly satiated? psychosis, and drug use Are you anxious with the thought that you cannot control the amount of food Treatment
If the symptoms correspond to the diagnostic Have you lost more than 6 kg of weight criteria of anorexia nervosa, the situation should during the last 3 months? be discussed with the family before treatment is Do you consider yourself obese although others say you are underweight? The adolescent and his/her family should be made Does food/thinking of food dominate aware of the seriousness of the disorder. Sometimes it takes time to motivate the patient to participate in the treatment. Anorexic adolescents deny their symptoms, and it The treatment is divided into: takes time and patience to motivate them to Restoring the state of nutrition accept treatment. Psychotherapeutic treatment Somatic symptoms include the following: Disappearance of menstruation If the state of malnutrition is life threatening, the The slowing of metabolism, constipation patient is first treated in a somatic ward, and Slow pulse, low blood pressure thereafter the adolescent is guided into therapy if Flushed and cold limbs Reduction of subcutaneous fat The forms of psychotherapy vary: both individual Bulimic adolescents are aware that their eating and family therapy have brought results; in cases habits are not normal, but the habit causes so of bulimia cognitive therapy and medication much guilt and shame that seeking treatment is (Lewandowski et al., 1997; Whittal, Agras, & Gould, 1999) [C] have been successful. Bulimia also causes physical symptoms, including With adolescents between the ages of 14 and 16 years, positive results have been obtained by treating the entire family. This is because the Disturbances of menstruation adolescent's symptoms are often connected with Disturbances in electrolyte and acid-alkali balances created by frequent difficulties to "cut loose" from the family. With older patients, individual, supportive, and long lasting treatment has been the best way to Damage to tooth enamel promote recovery. A prolonged state of malnutrition and insufficient outpatient care are reasons to direct a patient into forced treatment.
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A specialist should start all drug treatment. Different psychopharmaceuticals, for example, neuroleptics and antidepressants, have been tried in the treatment of anorexia nervosa. Controlled studies have proved them indisputably useful only if the disorder is linked to clear depression. Most research on the medical treatment of bulimia has concentrated on antidepressants (Bacaltchuk & Hay, 2003) [A], particularly fluoxetine, which has been found to decrease binge eating and vomiting for about two-thirds of bulimic patients. Prognosis
Early intervention improves prognosis. Eating disorders comprise a severe group of diseases that are difficult to treat. The prognosis for the near future of anorexic patients is good, but for the long term the prognosis is worse. The percentage of mortality is still 5% to 16%. Not enough follow-up research has been carried out on the prognosis of bulimia, but the disease is thought to last years. Bulimia can be associated with depression, self- destructiveness, alcohol or drug abuse, and other psychological problems. Link to Full Summary:
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Eating disorders: Core interventions in the treatment and
management of anorexia nervosa, bulimia nervosa, and
related eating disorders.
U.K. National Collaborating Centre for
shared with the patient and, where appropriate, Mental Health: Brief Summary
his/her family and caregivers. Bibliographic Source
Providing Good Information and Support
National Collaborating Centre for Mental Health. Eating disorders. Core interventions in the treatment C — Patients and, where appropriate, caregivers and management of anorexia nervosa, bulimia should be provided with education and information on nervosa and related eating disorders. Leicester (UK): the nature, course, and treatment of eating disorders. British Psychological Society; 2004. 260 p. [408 C — In addition to the provision of information, family and caregivers may be informed of self-help groups Major Recommendations
and support groups, and offered the opportunity to participate in such groups where they exist. Evidence categories (I-IV) and recommendation grades (A-C) are defined at the end of the Major C — Healthcare professionals should acknowledge Recommendations field. that many people with eating disorders are ambivalent about treatment. Healthcare professionals Care Across All Conditions
should also recognize the consequent demands and challenges this presents. Assessment and Coordination of Care
Getting Help Early
C — Assessment of people with eating disorders There can be serious long-term consequences to a should be comprehensive and include physical, delay in obtaining treatment. psychological, and social needs and a comprehensive assessment of risk to self. C — People with eating disorders seeking help should be assessed and receive treatment at the earliest C — The level of risk to the patient's mental and physical health should be monitored as treatment progresses because it may change--for example, C — Whenever possible patients should be engaged following weight gain or at times of transition and treated before reaching severe emaciation. This between services in cases of anorexia nervosa. requires both early identification and intervention. Effective monitoring and engagement of patients at C — For people with eating disorders presenting in severely low weight or with falling weight should be a primary care, general practitioners (GPs) should take responsibility for the initial assessment and the initial coordination of care. This includes the determination Management of Physical Aspects
of the need for emergency medical or psychiatric C — Where laxative abuse is present, patients should be advised to gradually reduce laxative use and C — Where management is shared between primary informed that laxative use does not significantly and secondary care, there should be clear agreement reduce calorie absorption. among individual healthcare professionals on the responsibility for monitoring patients with eating C — Treatment of both subthreshold and clinical disorders. This agreement should be in writing (where cases of an eating disorder in people with diabetes is appropriate using the Care Program Approach) and essential because of the greatly increased physical risk in this group.
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C — People with type 1 diabetes and an eating Identification and Screening of Eating Disorders in
disorder should have intensive regular physical Primary Care and Non-Mental Health Settings
monitoring, because they are at high risk of retinopathy and other complications. C — Target groups for screening should include young women with low body mass index (BMI) compared C — Pregnant women with eating disorders require with age norms, patients consulting with weight careful monitoring throughout the pregnancy and in concerns who are not overweight, women with the postpartum period. menstrual disturbances or amenorrhea, patients with gastrointestinal symptoms, patients with physical signs C — Patients with an eating disorder who are vomiting of starvation or repeated vomiting, and children with should have regular dental reviews. C — Patients who are vomiting should be given C — When screening for eating disorders one or two appropriate advice on dental hygiene, which should simple questions should be considered for use with include avoiding brushing after vomiting; rinsing with specific target groups (for example, "Do you think you a nonacid mouthwash after vomiting; and reducing an have an eating problem?" and "Do you worry acid oral environment (for example, limiting acidic excessively about your weight?"). C — Young people with type 1 diabetes and poor C — Healthcare professionals should advise people treatment adherence should be screened and with eating disorders and osteoporosis or related bone assessed for the presence of an eating disorder. disorders to refrain from physical activities that significantly increase the likelihood of falls. Management of Anorexia Nervosa in Primary
Additional Considerations for Children and
C —In anorexia nervosa, although weight and BMI are C — Family members, including siblings, should important indicators of physical risk they should not normally be included in the treatment of children and be considered the sole indicators (as they are adolescents with eating disorders. Interventions may unreliable in adults and especially in children). include sharing of information, advice on behavioral management, and facilitating communication. C — In assessing whether a person has anorexia nervosa, attention should be paid to the overall C — In children and adolescents with eating disorders, clinical assessment (repeated over time), including growth and development should be closely monitored. rate of weight loss, growth rates in children, objective Where development is delayed or growth is stunted physical signs, and appropriate laboratory tests. despite adequate nutrition, pediatric advice should be C — Patients with enduring anorexia nervosa not under the care of a secondary care service should be C — Healthcare professionals assessing children and offered an annual physical and mental health review adolescents with eating disorders should be alert to indicators of abuse (emotional, physical and sexual) and should remain so throughout treatment. Psychological Interventions for Anorexia
C — The right to confidentiality of children and adolescents with eating disorders should be respected. The delivery of psychological interventions should be accompanied by regular monitoring of a patient's C — Health care professionals working with children physical state including weight and specific indicators and adolescents with eating disorders should of increased physical risk. familiarize themselves with national guidelines and their employers' policies in the area of confidentiality.
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Common Elements of the Psychological Treatment of
Psychological Aspects of Inpatient Care
C — For inpatients with anorexia nervosa, a structured C — Therapies to be considered for the psychological symptom-focused treatment regimen with the treatment of anorexia nervosa include cognitive expectation of weight gain should be provided in analytic therapy (CAT), cognitive behavior therapy order to achieve weight restoration. It is important to (CBT), interpersonal psychotherapy (IPT), focal carefully monitor the patient's physical status during psychodynamic therapy, and family interventions focused explicitly on eating disorders. C — Psychological treatment should be provided C — Patient and, where appropriate, carer preference which has a focus both on eating behavior and should be taken into account in deciding which attitudes to weight and shape and on wider psychological treatment is to be offered. psychosocial issues with the expectation of weight C — The aims of psychological treatment should be to reduce risk, to encourage weight gain and healthy C — Rigid inpatient behavior modification programs eating, to reduce other symptoms related to an eating should not be used in the management of anorexia disorder, and to facilitate psychological and physical Post-Hospitalization Psychological Treatment
Outpatient Psychological Treatments in First Episode
C — Following inpatient weight restoration, people and Later Episodes
with anorexia nervosa should be offered outpatient psychological treatment that focuses both on eating C — Most people with anorexia nervosa should be behavior and attitudes to weight and shape and on managed on an outpatient basis, with psychological wider psychosocial issues, with regular monitoring of treatment (with physical monitoring) provided by a both physical and psychological risk. health care professional competent to give it and to assess the physical risk of people with eating C — The length of outpatient psychological treatment and physical monitoring following inpatient weight restoration should typically be at least 12 months. C — Outpatient psychological treatment and physical monitoring for anorexia nervosa should normally be of Additional Considerations for Children and
at least 6 months' duration. Adolescents with Anorexia Nervosa
C — For patients with anorexia nervosa, if during B — Family interventions that directly address the outpatient psychological treatment there is significant eating disorder should be offered to children and deterioration, or the completion of an adequate adolescents with anorexia nervosa. course of outpatient psychological treatment does not lead to any significant improvement, more intensive C — Children and adolescents with anorexia nervosa forms of treatment (for example, a move from should be offered individual appointments with a individual therapy to combined individual and family health care professional separate from those with work or day care or inpatient care) should be their family members or carers. C — The therapeutic involvement of siblings and other C — Dietary counseling should not be provided as the family members should be considered in all cases sole treatment for anorexia nervosa. because of the effects of anorexia nervosa on other C — In children and adolescents with anorexia nervosa, the need for inpatient treatment and the need for urgent weight restoration should be balanced alongside the educational and social needs of the young person.
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Pharmacological Interventions for Anorexia
Managing Weight Gain
C — In most patients with anorexia nervosa, an average weekly weight gain of 0.5-1 kg in inpatient C — There is a very limited evidence base for the settings and 0.5 kg in outpatient settings should be an pharmacological treatment of anorexia nervosa. A aim of treatment. This requires about 3,500 to 7,000 range of drugs may be used in the treatment of extra calories a week. comorbid conditions but caution should be exercised in their use given the physical vulnerability of many C — Regular physical monitoring, and in some cases people with anorexia nervosa. treatment with a multi-vitamin/multi-mineral supplement in oral form, is recommended for people C — Medication should not be used as the sole or with anorexia nervosa during both inpatient and primary treatment for anorexia nervosa. outpatient weight restoration. Caution should be exercised in the use of medication for comorbid conditions such as depressive or C — Total parenteral nutrition should not be used for obsessive-compulsive features, as they may resolve people with anorexia nervosa, unless there is with weight gain alone. significant gastrointestinal dysfunction. C — When medication is used to treat people with Managing Risk
anorexia nervosa, the side effects of drug treatment (in particular, cardiac side effects) should be carefully C — Health care professionals should monitor considered because of the compromised physical risk in patients with anorexia nervosa. If this cardiovascular function of many people with anorexia leads to the identification of increased physical risk, the frequency of the monitoring and nature of the investigations should be adjusted accordingly. C — Health care professionals should be aware of the risk of drugs that prolong the QTc interval on the C — People with anorexia nervosa and their carers electrocardiogram (ECG) (for example, antipsychotics, should be informed if the risk to their physical health tricyclic antidepressants, macrolide antibiotics, and some antihistamines). In patients with anorexia nervosa at risk of cardiac complications, the C — The involvement of a physician or pediatrician prescription of drugs with side effects that may with expertise in the treatment of physically at-risk compromise cardiac functioning should be avoided. patients with anorexia nervosa should be considered for all individuals who are physically at risk. C — If the prescription of medication that may compromise cardiac functioning is essential, ECG C — Pregnant women with either current or remitted monitoring should be undertaken. anorexia nervosa may need more intensive prenatal care to ensure adequate prenatal nutrition and fetal C — All patients with a diagnosis of anorexia nervosa should have an alert placed in their prescribing record concerning the risk of side effects. C — Oestrogen administration should not be used to treat bone density problems in children and Physical Management of Anorexia Nervosa
adolescents as this may lead to premature fusion of Anorexia nervosa carries considerable risk of serious physical morbidity. Awareness of the risk, careful monitoring, and, where appropriate, close liaison with an experienced physician are important in the management of the physical complications of anorexia nervosa.
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Feeding Against the Will of the Patient
C — Health care professionals without specialist experience of eating disorders, or in situations of C — Feeding against the will of the patient should be uncertainty, should consider seeking advice from an an intervention of last resort in the care and appropriate specialist when contemplating a management of anorexia nervosa. compulsory admission for a patient with anorexia nervosa, regardless of the age of the patient. C — Feeding against the will of the patient is a highly specialized procedure requiring expertise in the care C — Health care professionals managing patients with and management of those with severe eating anorexia nervosa, especially that of the binge purging disorders and the physical complications associated sub-type, should be aware of the increased risk of self- with it. This should only be done in the context of the harm and suicide, particularly at times of transition Mental Health Act 1983 or Children Act 1989. between services or service settings. C — When making the decision to feed against the will Additional Considerations for Children and
of the patient, the legal basis for any such action must Adolescents
Service Interventions for Anorexia Nervosa
C — Health care professionals should ensure that children and adolescents with anorexia nervosa who have reached a healthy weight have the increased This section considers those aspects of the service energy and necessary nutrients available in their diet system relevant to the treatment and management of to support further growth and development. anorexia nervosa. C — In the nutritional management of children and C — Most people with anorexia nervosa should be adolescents with anorexia nervosa, carers should be treated on an outpatient basis. included in any dietary education or meal planning. C — Where inpatient management is required, this C — Admission of children and adolescents with should be provided within reasonable travelling anorexia nervosa should be to age-appropriate distance to enable the involvement of relatives and facilities (with the potential for separate children and carers in treatment, to maintain social and adolescent services), which have the capacity to occupational links, and to avoid difficulty in transition provide appropriate educational and related activities. between primary and secondary care services. This is particularly important in the treatment of children and C — When a young person with anorexia nervosa refuses treatment that is deemed essential, consideration should be given to the use of the Mental C — Inpatient treatment should be considered for Health Act 1983 or the right of those with parental people with anorexia nervosa whose disorder is responsibility to override the young person's refusal. associated with high or moderate physical risk. C — Relying indefinitely on parental consent to C — People with anorexia nervosa requiring inpatient treatment should be avoided. It is recommended that treatment should be admitted to a setting that can the legal basis under which treatment is being carried provide the skilled implementation of refeeding with out should be recorded in the patient's case notes, and careful physical monitoring (particularly in the first this is particularly important in the case of children few days of refeeding), in combination with and adolescents. psychosocial interventions. C — For children and adolescents with anorexia C — Inpatient treatment or day patient treatment nervosa, where issues of consent to treatment are should be considered for people with anorexia highlighted, health care professionals should consider nervosa whose disorder has not improved with seeking a second opinion from an eating disorders appropriate outpatient treatment, or for whom there is a significant risk of suicide or severe self-harm.
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C — If the patient with anorexia nervosa and those C — Selective serotonin reuptake inhibitors (SSRIs) with parental responsibility refuse treatment, and (specifically fluoxetine) are the drugs of first choice for treatment is deemed to be essential, legal advice the treatment of bulimia nervosa in terms of should be sought in order to consider proceedings acceptability, tolerability, and reduction under the Children Act 1989. Psychological Interventions for Bulimia
C — For people with bulimia nervosa, the effective dose of fluoxetine is higher than for depression (60 mg B — As a possible first step, patients with bulimia B — No drugs, other than antidepressants, are nervosa should be encouraged to follow an evidence- recommended for the treatment of bulimia nervosa. based self-help program. Management of Physical Aspects of Bulimia
B — Health care professionals should consider providing direct encouragement and support to patients undertaking an evidence based self-help program, as this may improve outcomes. This may be Patients with bulimia nervosa can experience sufficient treatment for a limited subset of patients. considerable physical problems as a result of a range of behaviors associated with the condition. Awareness A — Cognitive behavior therapy for bulimia nervosa of the risks and careful monitoring should be a (CBT-BN), a specifically adapted form of CBT, should concern of all health care professionals working with be offered to adults with bulimia nervosa. The course people with this disorder. of treatment should be for 16 to 20 sessions over 4 to 5 C — Patients with bulimia nervosa who are vomiting frequently or taking large quantities of laxatives C — Adolescents with bulimia nervosa may be treated (especially if they are also underweight) should have with CBT-BN adapted as needed to suit their age, their fluid and electrolyte balance assessed. circumstances, and level of development, and including the family as appropriate. C — When electrolyte disturbance is detected, it is usually sufficient to focus on eliminating the behavior B — When people with bulimia nervosa have not responsible. In the small proportion of cases where responded to or do not want CBT, other psychological supplementation is required to restore electrolyte treatments should be considered. balance, oral rather than intravenous administration is recommended, unless there are problems with B — Interpersonal psychotherapy should be gastrointestinal absorption. considered as an alternative to CBT, but patients should be informed it takes 8-12 months to achieve Service Interventions for Bulimia Nervosa
results comparable with CBT. The great majority of patients with bulimia nervosa Pharmacological Interventions for Bulimia
can be treated as outpatients. There is a very limited role for the inpatient treatment of bulimia nervosa. This is primarily concerned with the management of B — As an alternative or additional first step to using suicide risk or severe self-harm. an evidence-based self-help program, adults with bulimia nervosa may be offered a trial of an C — The great majority of patients with bulimia antidepressant drug. nervosa should be treated in an outpatient setting. B — Patients should be informed that antidepressant C — For patients with bulimia nervosa who are at risk drugs can reduce the frequency of binge eating and of suicide or severe self-harm, admission as an purging, but the longterm effects are unknown. Any inpatient or day patient, or the provision of more beneficial effects will be rapidly apparent. intensive outpatient care, should be considered.
NEDA TOOLKIT for Parents
C — Psychiatric admission for people with bulimia B — Other psychological treatments (interpersonal nervosa should normally be undertaken in a setting psychotherapy for binge eating disorder and modified with experience of managing this disorder. dialectical behavior therapy) may be offered to adults with persistent binge eating disorder. C — Health care professionals should be aware that patients with bulimia nervosa who have poor impulse A — Patients should be informed that all control, notably substance misuse, may be less likely psychological treatments for binge eating disorder to respond to a standard program of treatment. As a have a limited effect on body weight. consequence treatment should be adapted to the problems presented. C — When providing psychological treatments for patients with binge eating disorder, consideration Additional Considerations for Children and
should be given to the provision of concurrent or Adolescents
consecutive interventions focusing on the management of comorbid obesity. C — Adolescents with bulimia nervosa may be treated C — Suitably adapted psychological treatments with CBT-BN adapted as needed to suit their age, should be offered to adolescents with persistent binge circumstances, and level of development, and eating disorder. including the family as appropriate.
General Treatment of Atypical Eating
Pharmacological Interventions for Binge
B — As an alternative or additional first step to using C — In the absence of evidence to guide the an evidence based self-help program, consideration management of atypical eating disorders (eating should be given to offering a trial of an SSRI disorders not otherwise specified) other than binge antidepressant drug to patients with binge eating eating disorder, it is recommended that the clinician considers following the guidance on the treatment of the eating problem that most closely resembles the B — Patients with binge eating disorders should be individual patient's eating disorder. informed that SSRIs can reduce binge eating, but the long-term effects are unknown. Antidepressant drug Psychological Treatments for Binge Eating
treatment may be sufficient treatment for a limited Disorder
subset of patients. B — As a possible first step, patients with binge eating disorder should be encouraged to follow an evidence Evidence Categories
based self-help program. B — Health care professionals should consider I: Evidence obtained from a single randomized providing direct encouragement and support to controlled trial or a meta-analysis of randomized patients undertaking an evidence-based self-help controlled trials program as this may improve outcomes. This may be IIA: Evidence obtained from at least one well-designed sufficient treatment for a limited subset of patients. controlled study without randomization IIB: Evidence obtained from at least one well-designed A — Cognitive behavior therapy for binge eating quasiexperimental study disorder (CBTBED), a specifically adapted form of CBT, III: Evidence obtained from well-designed non- should be offered to adults with binge eating disorder. experimental descriptive studies, such as comparative studies, correlation studies, and case-control studies IV: Evidence obtained from expert committee reports or opinions and/or clinical experience of respected
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Grade A — At least one randomized controlled trial as
part of a body of literature of overall good quality and consistency addressing the specific recommendation (evidence level I) without extrapolation Grade B — Well-conducted clinical studies but no
randomized clinical trials on the topic of recommendation (evidence levels II or III); or extrapolated from level I evidence Grade C — Expert committee reports or opinions
and/or clinical experiences of respected authorities (evidence level IV) or extrapolated from level I or II evidence. This grading indicates that directly applicable clinical studies of good quality are absent
or not readily available. Patient Resources
The following is available: Eating disorders: anorexia nervosa, bulimia nervosa and related eating disorders. Understanding NICE guidance: a guide for people with eating disorders, their advocates and carers, and the public. London: National Institute for Clinical Excellence. 2004 Jan. 44. Electronic copies: Available in English and Welsh in Portable Document Format (PDF) from the National Institute for Clinical Excellence (NICE) Web site Print copies: Available from the National Health Service (NHS) Response Line 0870 1555 455. ref: N0407. 11 Strand, London, WC2N 5HR.
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Identifying and treating eating disorders
American Academy of Pediatrics
Pediatricians need to be aware of the resources in Brief Summary
their communities so they can coordinate care of various treating professionals, helping to create a Bibliographic Source
seamless system between inpatient and outpatient management in their communities. Identifying and treating eating disorders. Pediatrics 2003 Jan;111(1):204-11. [78 references] PubMed Pediatricians should help advocate for parity of mental health benefits to ensure continuity of Major Recommendations
care for the patients with eating disorders. Pediatricians need to be knowledgeable about the Pediatricians need to advocate for legislation and early signs and symptoms of disordered eating regulations that secure appropriate coverage for and other related behaviors. medical, nutritional, and mental health treatment in settings appropriate to the severity of the illness (inpatient, day hospital, intensive Pediatricians should be aware of the careful balance that needs to be in place to decrease the outpatient, and outpatient). growing prevalence of eating disorders in children and adolescents. When counseling children on risk Pediatricians are encouraged to participate in the of obesity and healthy eating, care needs to be development of objective criteria for the optimal taken not to foster overaggressive dieting and to treatment of eating disorders, including the use of help children and adolescents build self-esteem specific treatment modalities and the transition while still addressing weight concerns. from one level of care to another. Pediatricians should be familiar with the screening and counseling guidelines for disordered eating and other related behaviors. Link to Full Summary: Pediatricians should know when and how to monitor and/ or refer patients with eating disorders to best address their medical and Link to Complete Guideline: nutritional needs, serving as an integral part of the multidisciplinary team. Pediatricians should be encouraged to calculate and plot weight, height, and body mass index (BMI) using age and gender-appropriate graphs at routine annual pediatric visits. Pediatricians can play a role in primary prevention through office visits and community- or school- based interventions with a focus on screening, education, and advocacy. Pediatricians can work locally, nationally, and internationally to help change cultural norms conducive to eating disorders and proactively to change media messages.
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Practice guideline for the treatment of patients with
and dental complications, it is important that psychiatrists consult other physician specialists and Bibliographic Sources
American Psychiatric Association (APA). Practice guideline for the treatment of patients with eating When a patient is managed by an interdisciplinary disorders. 3rd ed. Washington (DC): American team in an outpatient setting, communication among the professionals is essential to monitoring the Psychiatric Association (APA); 2006 Jun. 128 p. [765 patient's progress, making necessary adjustments to references] American Psychiatric Association. the treatment plan, and delineating the specific roles Treatment of patients with eating disorders, third and tasks of each team member [I]. edition. Am J Psychiatry 2006 Jul;163(7 Suppl):4-54. b. Assessing and Monitoring Eating Disorder
Symptoms and Behaviors
Each recommendation is identified as meriting one of A careful assessment of the patient's history, three categories of endorsement, based on the level of symptoms, behaviors, and mental status is the first clinical confidence regarding the recommendation, as step in making a diagnosis of an eating disorder [I]. indicated by a bracketed Roman numeral after the The complete assessment usually requires at least statement. Definitions of the categories of several hours and includes a thorough review of the endorsement are presented at the end of the "Major patient's height and weight history; restrictive and Recommendations" field. binge eating and exercise patterns and their changes; purging and other compensatory behaviors; core attitudes regarding weight, shape, and eating; and Psychiatric Management
associated psychiatric conditions [I]. A family history of Psychiatric management begins with the eating disorders or other psychiatric disorders, establishment of a therapeutic alliance, which is including alcohol and other substance use disorders; a enhanced by empathic comments and behaviors, family history of obesity; family interactions in relation positive regard, reassurance, and support [I]. Basic to the patient's disorder; and family attitudes toward psychiatric management includes support through the eating, exercise, and appearance are all relevant to provision of educational materials, including self-help the assessment [I]. A clinician's articulation of theories workbooks; information on community-based and that imply blame or permit family members to blame Internet resources; and direct advice to patients and one another or themselves can alienate family their families (if they are involved) [I]. A team members from involvement in the treatment and approach is the recommended model of care [I]. therefore be detrimental to the patient's care and recovery [I]. It is important to identify family stressors whose amelioration may facilitate recovery [I]. In the Coordinating Care and Collaborating with Other
assessment of children and adolescents, it is essential to involve parents and, whenever appropriate, school In treating adults with eating disorders, the personnel and health professionals who routinely psychiatrist may assume the leadership role within a work with the patient [I]. program or team that includes other physicians, psychologists, registered dietitians, and social workers or may work collaboratively on a team led by others. For the management of acute and ongoing medical
NEDA TOOLKIT for Parents
c. Assessing and Monitoring the Patient's General
d. Assessing and Monitoring the Patient's Safety and
A full physical examination of the patient is strongly The patient's safety will be enhanced when particular recommended and may be performed by a physician attention is given to suicidal ideation, plans, familiar with common findings in patients with eating intentions, and attempts as well as to impulsive and disorders. The examination should give particular compulsive self-harm behaviors [I]. Other aspects of attention to vital signs, physical status (including the patient's psychiatric status that greatly influence height and weight), cardiovascular and peripheral clinical course and outcome and that are important to vascular function, dermatological manifestations, and assess include mood, anxiety, and substance use evidence of self-injurious behaviors [I]. Calculation of disorders, as well as motivational status, personality the patient's body mass index (BMI) is also useful (see traits, and personality disorders [I]. Assessment for suicidality is of particular importance in patients with i-tables.pdf [for ages 2-20] and
co-occurring alcohol and other substance use i-adults.pdf [for adults]) [I]. Early recognition of eating
disorder symptoms and early intervention may e. Providing Family Assessment and Treatment
prevent an eating disorder from becoming chronic [I]. During treatment, it is important to monitor the For children and adolescents with anorexia nervosa, patient for shifts in weight, blood pressure, pulse, family involvement and treatment are essential [I]. For other cardiovascular parameters, and behaviors likely older patients, family assessment and involvement to provoke physiological decline and collapse [I]. may be useful and should be considered on a case-by- Patients with a history of purging behaviors should case basis [II]. Involving spouses and partners in also be referred for a dental examination [I]. Bone treatment may be highly desirable [II]. density examinations should be obtained for patients who have been amenorrheic for 6 months or more [I]. 2. Choosing a Site of Treatment
In younger patients, examination should include Services available for treating eating disorders can growth pattern, sexual development (including sexual range from intensive inpatient programs (in which maturity rating), and general physical development [I]. general medical care is readily available) to The need for laboratory analyses should be residential and partial hospitalization programs to determined on an individual basis depending on the varying levels of outpatient care (in which the patient patient's condition or the laboratory tests' relevance receives general medical treatment, nutritional to making treatment decisions [I]. counseling, and/or individual, group, and family psychotherapy). Because specialized programs are not available in all geographic areas and their financial requirements are often significant, access to these programs may be limited; petition, explanation, and follow-up by the psychiatrist on behalf of patients and families may help procure access to these programs. Pretreatment evaluation of the patient is essential in choosing the appropriate treatment setting [I].
NEDA TOOLKIT for Parents
In determining a patient's initial level of care or Hospitalization should occur before the onset of whether a change to a different level of care is medical instability as manifested by abnormalities in appropriate, it is important to consider the patient's vital signs (e.g., marked orthostatic hypotension with overall physical condition, psychology, behaviors, and an increase in pulse of 20 beats per minute (bpm) or a social circumstances rather than simply rely on one or drop in standing blood pressure of 20 millimeters of more physical parameters, such as weight [I]. Weight mercury (mmHg), bradycardia <40 bpm, tachycardia in relation to estimated individually healthy weight, >110 bpm, or an inability to sustain core body the rate of weight loss, cardiac function, and temperature), physical findings, or laboratory tests [I]. metabolic status are the most important physical To avert potentially irreversible effects on physical parameters to be considered when choosing a growth and development, many children and treatment setting; other psychosocial parameters are adolescents require inpatient medical treatment, even also important [I]. Healthy weight estimates for a when weight loss, although rapid, has not been as given individual must be determined by that person's severe as that suggesting a need for hospitalization in physicians [I]. Such estimates may be based on adult patients [I]. historical considerations (often including that person's growth charts) and, for women, the weight at which Patients who are physiologically stabilized on acute healthy menstruation and ovulation resume, which medical units will still require specific inpatient may be higher than the weight at which menstruation treatment for eating disorders if they do not meet and ovulation became impaired. Admission to or biopsychosocial criteria for less intensive levels of continuation of an intensive level of care (e.g., care and/or if no suitable less intensive levels of care hospitalization) may be necessary when access to a are accessible because of geographic or other reasons less intensive level of care (e.g., partial hospitalization) [I]. Weight level per se should never be used as the is absent because of geography or a lack of resources sole criterion for discharge from inpatient care [I]. Assisting patients in determining and practicing appropriate food intake at a healthy body weight is Generally, adult patients who weigh less than likely to decrease the chances of their relapsing after approximately 85% of their individually estimated healthy weights have considerable difficulty gaining weight outside of a highly structured program [II]. Most patients with uncomplicated bulimia nervosa do Such programs, including inpatient care, may be not require hospitalization; indications for the medically and psychiatrically necessary even for some hospitalization of such patients include severe patients who are above 85% of their individually disabling symptoms that have not responded to estimated healthy weight [I]. Factors suggesting that adequate trials of outpatient treatment, serious hospitalization may be appropriate include rapid or concurrent general medical problems (e.g., metabolic persistent decline in oral intake, a decline in weight abnormalities, hematemesis, vital sign changes, despite maximally intensive outpatient or partial uncontrolled vomiting), suicidality, psychiatric hospitalization interventions, the presence of disturbances that would warrant the patient's additional stressors that may interfere with the hospitalization independent of the eating disorder patient's ability to eat, knowledge of the weight at diagnosis, or severe concurrent alcohol or drug which instability previously occurred in the patient, dependence or abuse [I]. co-occurring psychiatric problems that merit hospitalization, and the degree of the patient's denial Legal interventions, including involuntary and resistance to participate in his or her own care in hospitalization and legal guardianship, may be less intensively supervised settings [I]. necessary to address the safety of treatment-reluctant patients whose general medical conditions are life threatening [I].
NEDA TOOLKIT for Parents
The decision about whether a patient should be In an outpatient setting, patients can remain with their hospitalized on a psychiatric versus a general medical families and continue to attend school or work. or adolescent/ pediatric unit should be made based on Inpatient care may interfere with family, school, and the patient's general medical and psychiatric status, work obligations; however, it is important to give the skills and abilities of local psychiatric and general priority to the safe and adequate treatment of a medical staff, and the availability of suitable programs rapidly progressing or otherwise unresponsive to care for the patient's general medical and disorder for which hospital care might be necessary [I]. psychiatric problems [I]. There is evidence to suggest that patients with eating disorders have better 3. Choice of Specific Treatments for Anorexia
outcomes when treated on inpatient units specializing in the treatment of these disorders than when treated in general inpatient settings where staff lack expertise The aims of treating anorexia nervosa are to 1) restore and experience in treating eating disorders [II]. patients to a healthy weight (associated with the return of menses and normal ovulation in female Outcomes from partial hospitalization programs that patients, normal sexual drive and hormone levels in specialize in eating disorders are highly correlated male patients, and normal physical and sexual growth with treatment intensity. The more successful and development in children and adolescents); 2) treat programs involve patients in treatment at least 5 physical complications; 3) enhance patients' days/week for 8 hours/day; thus, it is recommended motivation to cooperate in the restoration of healthy that partial hospitalization programs be structured to eating patterns and participate in treatment; 4) provide at least this level of care [I]. provide education regarding healthy nutrition and eating patterns; 5) help patients reassess and change Patients who are considerably below their healthy core dysfunctional cognitions, attitudes, motives, body weight and are highly motivated to adhere to conflicts, and feelings related to the eating disorder; 6) treatment, have cooperative families, and have a brief treat associated psychiatric conditions, including symptom duration may benefit from treatment in deficits in mood and impulse regulation and self- outpatient settings, but only if they are carefully esteem and behavioral problems; 7) enlist family monitored and if they and their families understand support and provide family counseling and therapy that a more restrictive setting may be necessary if where appropriate; and 8) prevent relapse. persistent progress is not evident in a few weeks [II]. Careful monitoring includes at least weekly (and often a. Nutritional Rehabilitation
two to three times a week) weight determinations The goals of nutritional rehabilitation for seriously done directly after the patient voids and while the underweight patients are to restore weight, normalize patient is wearing the same class of garment (e.g., eating patterns, achieve normal perceptions of hunger hospital gown, standard exercise clothing) [I]. In and satiety, and correct biological and psychological patients who purge, it is important to routinely sequelae of malnutrition [I]. For patients age 20 years monitor serum electrolytes [I]. Urine specific gravity, and younger, an individually appropriate range for orthostatic vital signs, and oral temperatures may expected weight and goals for weight and height may need to be measured on a regular basis [II]. be determined by considering measurements and clinical factors, including current weight, bone age estimated from wrist x-rays and nomograms, menstrual history (in adolescents with secondary amenorrhea), mid-parental heights, assessments of skeletal frame, and benchmarks from Centers for Disease Control and Prevention (CDC) growth charts (available at http://www.cdc.gov/growthcharts/) [I].
NEDA TOOLKIT for Parents
For individuals who are markedly underweight and for Patients who require much lower caloric intakes or children and adolescents whose weight has deviated are suspected of artificially increasing their weight by below their growth curves, hospital-based programs fluid loading should be weighed in the morning after for nutritional rehabilitation should be considered [I]. they have voided and are wearing only a gown; their For patients in inpatient or residential settings, the fluid intake should also be carefully monitored [I]. discrepancy between healthy target weight and Urine specimens obtained at the time of a patient's weight at discharge may vary depending on patients' weigh-in may need to be assessed for specific gravity ability to feed themselves, their motivation and ability to help ascertain the extent to which the measured to participate in aftercare programs, and the weight reflects excessive water intake [I]. Regular adequacy of aftercare, including partial monitoring of serum potassium levels is hospitalization [I]. It is important to implement recommended in patients who are persistent vomiters refeeding programs in nurturing emotional contexts [I]. Hypokalemia should be treated with oral or [I]. For example, it is useful for staff to convey to intravenous potassium supplementation and patients their intention to take care of them and not rehydration [I]. let them die even when the illness prevents the patients from taking care of themselves [II]. It is also Physical activity should be adapted to the food intake useful for staff to communicate clearly that they are and energy expenditure of the patient, taking into not seeking to engage in control battles and have no account the patient's bone mineral density and punitive intentions when using interventions that the cardiac function [I]. Once a safe weight is achieved, patient may experience as aversive [I]. the focus of an exercise program should be on the patient's gaining physical fitness as opposed to In working to achieve target weights, the treatment expending calories [I]. plan should also establish expected rates of controlled weight gain. Clinical consensus suggests Weight gain results in improvements in most of the that realistic targets are 2-3 pounds (lb)/week for physiological and psychological complications of hospitalized patients and 0.5-1 lb/week for individuals semistarvation [I]. It is important to warn patients in outpatient programs [II]. Registered dietitians can about the following aspects of early recovery [I]: As help patients choose their own meals and can provide they start to recover and feel their bodies getting a structured meal plan that ensures nutritional larger, especially as they approach frightening, adequacy and that none of the major food groups are magical numbers on the scale that represent phobic avoided [I]. Formula feeding may have to be added to weights, they may experience a resurgence of anxious the patient's diet to achieve large caloric intake[II]. It and depressive symptoms, irritability, and sometimes is important to encourage patients with anorexia suicidal thoughts. These mood symptoms, non-food- nervosa to expand their food choices to minimize the related obsessional thoughts, and compulsive severely restricted range of foods initially acceptable behaviors, although often not eradicated, usually to them [II]. Caloric intake levels should usually start decrease with sustained weight gain and weight at 30-40 kilocalories/kilogram (kcal/kg) per day maintenance. Initial refeeding may be associated with (approximately 1,000-1,600 kcal/day). During the mild transient fluid retention, but patients who weight gain phase, intake may have to be advanced abruptly stop taking laxatives or diuretics may progressively to as high as 70-100 kcal/kg per day for experience marked rebound fluid retention for several some patients; many male patients require a very weeks. As weight gain progresses, many patients also large number of calories to gain weight [II]. develop acne and breast tenderness and become unhappy and demoralized about resulting changes in
NEDA TOOLKIT for Parents
Patients may experience abdominal pain and bloating Patients' serum levels of phosphorus, magnesium, with meals from the delayed gastric emptying that potassium, and calcium should be determined daily accompanies malnutrition. These symptoms may for the first 5 days of refeeding and every other day for respond to pro-motility agents [III]. Constipation may several weeks thereafter, and electrocardiograms be ameliorated with stool softeners; if unaddressed, it should be performed as indicated [II]. For children and can progress to obstipation and, rarely, to acute bowel adolescents who are severely malnourished (weight <70% of healthy body weight), cardiac monitoring, especially at night, may be desirable [II]. Phosphorus, When life-preserving nutrition must be provided to a magnesium, and/or potassium supplementation patient who refuses to eat, nasogastric feeding is should be given when indicated [I]. preferable to intravenous feeding [I]. When nasogastric feeding is necessary, continuous feeding b. Psychosocial Interventions
(i.e., over 24 hours) may be better tolerated by patients and less likely to result in metabolic abnormalities The goals of psychosocial interventions are to help than three to four bolus feedings a day [II]. In very patients with anorexia nervosa 1) understand and difficult situations, where patients physically resist and cooperate with their nutritional and physical constantly remove their nasogastric tubes, feeding rehabilitation, 2) understand and change the through surgically placed gastrostomy or jejunostomy behaviors and dysfunctional attitudes related to their tubes may be an alternative to nasogastric feeding [II]. eating disorder, 3) improve their interpersonal and In determining whether to begin involuntary forced social functioning, and 4) address comorbid feeding, the clinician should carefully think through psychopathology and psychological conflicts that the clinical circumstances, family opinion, and reinforce or maintain eating disorder behaviors. relevant legal and ethical dimensions of the patient's treatment [I]. The general principles to be followed in Acute Anorexia Nervosa
making the decision are those directing good, humane care; respecting the wishes of competent patients; and During acute refeeding and while weight gain is intervening respectfully with patients whose judgment occurring, it is beneficial to provide anorexia nervosa is severely impaired by their psychiatric disorders patients with individual psychotherapeutic when such interventions are likely to have beneficial management that is psychodynamically informed and results [I]. For cooperative patients, supplemental provides empathic understanding, explanations, praise overnight pediatric nasogastric tube feeding has been for positive efforts, coaching, support, encouragement, used in some programs to facilitate weight gain [III]. and other positive behavioral reinforcement [I]. Attempts to conduct formal psychotherapy with With severely malnourished patients (particularly starving patients who are often negativistic, those whose weight is <70% of their healthy body obsessional, or mildly cognitively impaired may be weight) who undergo aggressive oral, nasogastric, or ineffective [II]. parenteral refeeding, a serious refeeding syndrome can occur. Initial assessments should include vital For children and adolescents, the evidence indicates signs and food and fluid intake and output, if that family treatment is the most effective indicated, as well as monitoring for edema, rapid intervention [I]. In methods modeled after the weight gain (associated primarily with fluid overload), Maudsley approach, families become actively congestive heart failure, and gastrointestinal involved, in a blame-free atmosphere, in helping patients eat more and resist compulsive exercising
NEDA TOOLKIT for Parents
For some outpatients, a short-term course of family For adolescents who have been ill <3 years, after therapy using these methods may be as effective as a weight has been restored, family therapy is a long-term course; however, a shorter course of necessary component of treatment [I]. Although therapy may not be adequate for patients with severe studies of different psychotherapies focus on these obsessive-compulsive features or non-intact families interventions as distinctly separate treatments, in practice there is frequent overlap of interventions [II]. Most inpatient-based nutritional rehabilitation It is important for clinicians to pay attention to programs create a milieu that incorporates emotional cultural attitudes, patient issues involving the gender nurturance and a combination of reinforcers that link of the therapist, and specific concerns about possible exercise, bed rest, and privileges to target weights, abuse, neglect, or other developmental traumas [II]. desired behaviors, feedback concerning changes in Clinicians need to attend to their countertransference weight, and other observable parameters [II]. For reactions to patients with a chronic eating disorder, adolescents treated in inpatient settings, participation which often include beleaguerment, demoralization, in family group psychoeducation may be helpful to and excessive need to change the patient [I]. their efforts to regain weight and may be equally as effective as more intensive forms of family therapy At the same time, when treating patients with chronic illnesses, clinicians need to understand the longitudinal course of the disorder and that patients Anorexia Nervosa after Weight Restoration
can recover even after many years of illness [I]. Because of anorexia nervosa's enduring nature, Once malnutrition has been corrected and weight gain psychotherapeutic treatment is frequently required for has begun, psychotherapy can help patients with at least 1 year and may take many years [I]. anorexia nervosa understand 1) their experience of their illness; 2) cognitive distortions and how these Anorexics and Bulimics Anonymous and Overeaters have led to their symptomatic behavior; 3) Anonymous are not substitutes for professional developmental, familial, and cultural antecedents of treatment [I]. Programs that focus exclusively on their illness; 4) how their illness may have been a abstaining from binge eating, purging, restrictive maladaptive attempt to regulate their emotions and eating, or excessive exercising (e.g., 12-step programs) cope; 5) how to avoid or minimize the risk of relapse; without attending to nutritional considerations or and 6) how to better cope with salient developmental cognitive and behavioral deficits have not been and other important life issues in the future. Clinical studied and therefore cannot be recommended as the experience shows that patients may often display sole treatment for anorexia nervosa [I]. improved mood, enhanced cognitive functioning, and clearer thought processes after there is significant It is important for programs using 12-step models to improvement in nutritional intake, even before there is be equipped to care for patients with the substantial substantial weight gain [II]. psychiatric and general medical problems often associated with eating disorders [I]. Although families To help prevent patients from relapsing, emerging and patients are increasingly accessing worthwhile, data support the use of cognitive-behavioral helpful information through online web sites, psychotherapy for adults [II]. Many clinicians also use newsgroups, and chat rooms, the lack of professional interpersonal and/or psychodynamically oriented supervision within these resources may sometimes individual or group psychotherapy for adults after lead to users' receiving misinformation or create their weight has been restored [II]. unhealthy dynamics among users.
NEDA TOOLKIT for Parents
It is recommended that clinicians inquire about a patient's or family's use of Internet-based support and For example, these medications may be considered for other alternative and complementary approaches and those with persistent depressive, anxiety, or obsessive- be prepared to openly and sympathetically discuss the compulsive symptoms and for bulimic symptoms in information and ideas gathered from these sources [I]. weight-restored patients [II]. A U.S. Food and Drug Administration (FDA) black box warning concerning Chronic Anorexia Nervosa
the use of bupropion in patients with eating disorders has been issued because of the increased seizure risk Patients with chronic anorexia nervosa generally show in these patients. Adverse reactions to tricyclic a lack of substantial clinical response to formal antidepressants and monoamine oxidase inhibitors psychotherapy. Nevertheless, many clinicians report (MAOIs) are more pronounced in malnourished seeing patients with chronic anorexia nervosa who, individuals, and these medications should generally be after many years of struggling with their disorder, avoided in this patient population [I]. Second- experience substantial remission, so clinicians are generation antipsychotics, particularly olanzapine, justified in maintaining and extending some degree risperidone, and quetiapine, have been used in small of hope to patients and families [II]. More extensive series and individual cases for patients, but controlled psychotherapeutic measures may be undertaken to studies of these medications are lacking. Clinical engage and help motivate patients whose illness is impressions suggest that they may be useful in resistant to treatment [II] or, failing that, as patients with severe, unremitting resistance to gaining compassionate care [I]. For patients who have weight; severe obsessional thinking; and denial that difficulty talking about their problems, clinicians have assumes delusional proportions [III]. Small doses of reported that a variety of nonverbal therapeutic older antipsychotics such as chlorpromazine may be methods, such as the creative arts, movement therapy helpful prior to meals in very disturbed patients [III]. programs, and occupational therapy, can be useful Although the risks of extrapyramidal side effects are [III]. Psychosocial programs designed for patients with less with second-generation antipsychotics than with chronic eating disorders are being implemented at first-generation antipsychotics, debilitated anorexia several treatment sites and may prove useful [II]. nervosa patients may be at a higher risk for these than c. Medications and Other Somatic Treatments
Therefore, if these medications are used, it is i. Weight Restoration
recommended that patients be carefully monitored for extrapyramidal symptoms and akathisia [I]. It is also The decision about whether to use psychotropic important to routinely monitor patients for potential medications and, if so, which medications to choose side effects of these medications, which can result in will be based on the patient's clinical presentation [I]. insulin resistance, abnormal lipid metabolism, and The limited empirical data on malnourished patients prolongation of the QTc interval [I]. Because indicate that selective serotonin reuptake inhibitors ziprasidone has not been studied in individuals with (SSRIs) do not appear to confer advantage regarding anorexia nervosa and can prolong QTc intervals, weight gain in patients who are concurrently receiving careful monitoring of serial electrocardiograms and inpatient treatment in an organized eating disorder serum potassium measurements is needed if anorexic program [I]. However, SSRIs in combination with patients are treated with ziprasidone [I]. psychotherapy are widely used in treating patients with anorexia nervosa.
NEDA TOOLKIT for Parents
Antianxiety agents used selectively before meals may Hormone therapy usually induces monthly menstrual be useful to reduce patients' anticipatory anxiety bleeding, which may contribute to the patient's denial before eating [III], but because eating disorder of the need to gain further weight [II]. Before estrogen patients may have a high propensity to become is offered, it is recommended that efforts be made to dependent on benzodiazepines, these medications increase weight and achieve resumption of normal should be used routinely only with considerable menses [I]. There is no indication for the use of caution [I]. Pro-motility agents such as bisphosphonates such as alendronate in patients with metoclopramide may be useful for bloating and anorexia nervosa [II]. Although there is no evidence abdominal pains that occur during refeeding in some that calcium or vitamin patients [II]. Electroconvulsive therapy (ECT) has D supplementation reverses decreased bone mineral generally not been useful except in treating severe co- density, when calcium dietary intake is inadequate for occurring disorders for which ECT is otherwise growth and maintenance, calcium supplementation should be considered [I], and when the individual is not exposed to daily sunlight, vitamin D Although no specific hormone treatments or vitamin supplementation may be used [I]. However, large supplements have been shown to be helpful [I], supplemental doses of vitamin D may be hazardous [I]. supplemental calcium and vitamin D are often recommended [III]. Zinc supplements have been 4. Choice of Specific Treatments for Bulimia Nervosa
reported to foster weight gain in some patients, and patients may benefit from daily zinc-containing The aims of treatment for patients with bulimia multivitamin tablets [II]. nervosa are to 1) reduce and, where possible, eliminate binge eating and purging; 2) treat physical ii.
complications of bulimia nervosa; 3) enhance patients' motivation to cooperate in the restoration of healthy Some data suggest that fluoxetine in dosages of up to eating patterns and participate in treatment; 4) 60 mg/day may help prevent relapse [II]. For patients provide education regarding healthy nutrition and receiving cognitive-behavioral therapy (CBT) after eating patterns; 5) help patients reassess and change weight restoration, adding fluoxetine does not appear core dysfunctional thoughts, attitudes, motives, to confer additional benefits with respect to conflicts, and feelings related to the eating disorder; 6) preventing relapse [II]. Antidepressants and other treat associated psychiatric conditions, including psychiatric medications may be used to treat specific, deficits in mood and impulse regulation, self-esteem, ongoing psychiatric symptoms of depressive, anxiety, and behavior; 7) enlist family support and provide obsessive-compulsive, and other comorbid disorders family counseling and therapy where appropriate; and [I]. Clinicians should attend to the black box warnings 8) prevent relapse. in the package inserts relating to antidepressants and discuss the potential benefits and risks of a. Nutritional Rehabilitation Counseling
antidepressant treatment with patients and families if such medications are to be prescribed [I]. A primary focus for nutritional rehabilitation is to help the patient develop a structured meal plan as a means iii.
Chronic Anorexia Nervosa
of reducing the episodes of dietary restriction and the urges to binge and purge [I]. Adequate nutritional Although hormone replacement therapy (HRT) is intake can prevent craving and promote satiety [I]. It is frequently prescribed to improve bone mineral density important to assess nutritional intake for all patients, in female patients, no good supporting evidence exists even those with a normal body weight (or normal either in adults or in adolescents to demonstrate its BMI), as normal weight does not ensure appropriate nutritional intake or normal body composition [I].
NEDA TOOLKIT for Parents
Among patients of normal weight, nutritional A variety of self-help and professionally guided self- counseling is a useful part of treatment and helps help programs have been effective for some patients reduce food restriction, increase the variety of foods with bulimia nervosa [I]. Several innovative online eaten, and promote healthy but not compulsive programs are currently under investigation and may exercise patterns [I]. be recommended in the absence of alternative treatments [III]. Support groups and 12-step programs b. Psychosocial Interventions
such as Overeaters Anonymous may be helpful as adjuncts in the initial treatment of bulimia nervosa It is recommended that psychosocial interventions be and for subsequent relapse prevention, but they are chosen on the basis of a comprehensive evaluation of not recommended as the sole initial treatment the individual patient that takes into consideration approach for bulimia nervosa [I]. the patient's cognitive and psychological Issues of countertransference, discussed above with development, psychodynamic issues, cognitive style, respect to the treatment of patients with anorexia comorbid psychopathology, and preferences as well nervosa, also apply to the treatment of patients with as patient age and family situation [I]. For treating bulimia nervosa [I]. acute episodes of bulimia nervosa in adults, the evidence strongly supports the value of CBT as the c. Medications
most effective single intervention [I]. Some patients who do not respond initially to CBT may respond when i.
switched to either interpersonal therapy (IPT) or Antidepressants are effective as one component of an fluoxetine [II] or other modes of treatment such as initial treatment program for most bulimia nervosa family and group psychotherapies [III]. Controlled patients [I], with SSRI treatment having the most trials have also shown the utility of IPT in some cases evidence for efficacy and the fewest difficulties with adverse effects [I]. To date, fluoxetine is the best studied of these and is the only FDA-approved In clinical practice, many practitioners combine medication for bulimia nervosa. Sertraline is the only elements of CBT, IPT, and other psychotherapeutic other SSRI that has been shown to be effective, as techniques. Compared with psychodynamic or demonstrated in a small, randomized controlled trial. interpersonal therapy, CBT is associated with more In the absence of therapists qualified to treat bulimia rapid remission of eating symptoms [I], but using nervosa with CBT, fluoxetine is recommended as an psychodynamic interventions in conjunction with CBT initial treatment [I]. Dosages of SSRIs higher than and other psychotherapies may yield better global those used for depression (e.g., fluoxetine 60 mg/day) outcomes [II]. Some patients, particularly those with are more effective in treating bulimic symptoms [I]. concurrent personality pathology or other co- Evidence from a small open trial suggests fluoxetine occurring disorders, require lengthy treatment [II]. may be useful for adolescents with bulimia [II]. Clinical reports suggest that psychodynamic and psychoanalytic approaches in individual or group Antidepressants may be helpful for patients with format are useful once bingeing and purging improve substantial concurrent symptoms of depression, anxiety, obsessions, or certain impulse disorder symptoms or for patients who have not benefited from Family therapy should be considered whenever or had only a suboptimal response to appropriate possible, especially for adolescent patients still living psychosocial therapy [I]. Tricyclic antidepressants and with their parents [II] or older patients with ongoing MAOIs have been rarely used with bulimic patients conflicted interactions with parents [III]. Patients with and are not recommended as initial treatments [I]. marital discord may benefit from couples therapy [II].
NEDA TOOLKIT for Parents
Several different antidepressants may have to be tried iii.
Combining Psychosocial Interventions and
sequentially to identify the specific medication with the optimum effect [I]. In some research, the combination of antidepressant Clinicians should attend to the black box warnings therapy and CBT results in the highest remission rates; relating to antidepressants and discuss the potential therefore, this combination is recommended initially benefits and risks of antidepressant treatment with when qualified CBT therapists are available patients and families if such medications are to be [II]. In addition, when CBT alone does not result in a substantial reduction in symptoms after 10 sessions, it is recommended that fluoxetine be added [II]. Small controlled trials have demonstrated the efficacy of the anticonvulsant medication topiramate, but iv.
because adverse reactions to this medication are common, it should be used only when other Bright light therapy has been shown to reduce binge medications have proven ineffective [III]. Also, because frequency in several controlled trials and may be used patients tend to lose weight on topiramate, its use is as an adjunct when CBT and antidepressant therapy problematic for normal or underweight individuals have not been effective in reducing bingeing Two drugs that are used for mood stabilization, 5. Eating Disorder Not Otherwise Specified
lithium and valproic acid, are both prone to induce weight gain in patients [I] and may be less acceptable Patients with subsyndromal anorexia nervosa or to patients who are weight preoccupied. However, bulimia nervosa who meet most but not all of the lithium is not recommended for patients with bulimia DSM-IV-TR criteria (e.g., weight >85% of expected nervosa because it is ineffective [I]. In patients with co- weight, binge and purge frequency less than twice per occurring bulimia nervosa and bipolar disorder, week) merit treatment similar to that of patients who treatment with lithium is more likely to be associated fulfill all criteria for these diagnoses [II]. with toxicity [I]. a. Binge Eating Disorder
i. Nutritional Rehabilitation and Counseling
Limited evidence supports the use of fluoxetine for relapse prevention [II], but substantial rates of relapse Behavioral weight control programs incorporating occur even with treatment. In the absence of adequate low- or very-low-calorie diets may help with weight data, most clinicians recommend continuing loss and usually with reduction of symptoms of binge antidepressant therapy for a minimum of 9 months eating [I]. It is important to advise patients that weight and probably for a year in most patients with bulimia loss is often not maintained and that binge eating may nervosa [II]. Case reports indicate that recur when weight is gained [I]. It is also important to methylphenidate may be helpful for bulimia nervosa advise them that weight gain after weight loss may be patients with concurrent attention- accompanied by a return of binge eating patterns [I]. deficit/hyperactivity disorder (ADHD) [III], but it should Various combinations of diets, behavior therapies, be used only for patients who have a very clear interpersonal therapies, psychodynamic diagnosis of ADHD [I]. psychotherapies, non-weight-directed psychosocial treatments, and even some "non-diet/health at every size" psychotherapy approaches may be of benefit for binge eating and weight loss or stabilization [III].
NEDA TOOLKIT for Parents
Patients with a history of repeated weight loss The anticonvulsant medication topiramate is effective followed by weight gain ("yo-yo" dieting) or patients for binge reduction and weight loss, although adverse with an early onset of binge eating may benefit from effects may limit its clinical utility for some individuals following programs that focus on decreasing binge [II]. Zonisamide may produce similar effects regarding eating rather than on weight loss [II]. weight loss and can also cause side effects [III]. There is little empirical evidence to suggest that obese iv.
Combining Psychosocial and Medication
binge eaters who are primarily seeking weight loss should receive different treatment than obese individuals who do not binge eat [I]. For most eating disorder patients, adding antidepressant medication to their behavioral weight ii. Other Psychosocial Treatments
control and/or CBT regimen does not have a significant effect on binge suppression when Substantial evidence supports the efficacy of compared with medication alone. However, individual or group CBT for the behavioral and medications may induce additional weight reduction psychological symptoms of binge eating disorder [I]. and have associated psychological benefits [II]. Adding IPT and dialectical behavior therapy have also been the weight loss medication orlistat to a guided self- shown to be effective for behavioral and help CBT program may yield additional weight psychological symptoms and can be considered as reduction [II]. Fluoxetine in conjunction with group alternatives [II]. Patients may be advised that some behavioral treatment may not aid in binge cessation studies suggest that most patients continue to show or weight loss but may reduce depressive symptoms behavioral and psychological improvement at their 1- year follow-up [II]. Substantial evidence supports the efficacy of self-help and guided self-help CBT b. Night Eating Syndrome
programs and their use as an initial step in a sequenced treatment program [I]. Other therapies that Progressive muscle relaxation has been shown to use a "non-diet" approach and focus on self- reduce symptoms associated with night eating acceptance, improved body image, better nutrition syndrome [III]. Sertraline has also been shown to and health, and increased physical movement have reduce these symptoms [II]. been tried, as have addiction-based 12-step approaches, self-help organizations, and treatment Definitions
programs based on the Alcoholics Anonymous model, but no systematic outcome studies of these programs The three categories of endorsement are as follows: are available [III]. [I] Recommended with substantial clinical confidence [II] Recommended with moderate clinical confidence iii. Medications
[III] May be recommended on the basis of individual Substantial evidence suggests that treatment with antidepressant medications, particularly SSRI antidepressants, is associated with at least a short-term reduction in binge eating behavior but, in most cases, not with substantial weight loss [I]. The Link to Full Summary: medication dosage is typically at the high end of the recommended range [I]. The appetite-suppressant medication sibutramine is effective for binge Link to Information for the Public: suppression, at least in the short term, and is also associated with significant weight loss [II].
NEDA TOOLKIT for Parents
How to find a suitable treatment setting
Several considerations enter into finding a suitable
Determining Quality of Care
treatment setting for the patient. The patient's options may be limited by his/her available insurance Determining the quality of care offered by a center is coverage, by whether or not a particular center or difficult at this time. No organization yet exists to therapist accepts insurance, and the ability of the specifically accredit treatment centers for the quality patient to pay in the absence of insurance. Primary and standard of eating disorder-specific care. Leaders care physicians (i.e., family doctor, gynecologist, within the national eating disorders community pediatrician, internal medicine doctor) may be able to organized in mid-2006 to develop care standards and play a valuable advisory role in referring patients for a process for accrediting eating disorder centers. That treatment if they have had previous experience with effort is ongoing. One national organization, the Joint referring to eating disorder facilities, participating as a Commission on Accreditation of Healthcare member of a care team for a patient with an eating Organizations (JCAHO), provides generic accreditation disorder, or outpatient therapists. Some primary care for healthcare facilities, and some eating disorder physicians, however, don't have much or any centers advertise "JCAHO accreditation." JCAHO experience in this area. Therefore, it's important to ask accreditation does not link directly to quality of care about their experience before asking for a referral. for treatment of eating disorders. Another issue regarding quality of care is that much care is delivered In 2005 and again in 2007, ECRI Institute (a nonprofit on an outpatient basis. For individual psychotherapists health services research organization) sought to in private practice, no special credentialing or identify all healthcare facilities that stated that they specialty certification exists regarding treatment of offered treatment for eating disorders. This included eating disorders. Thus, any mental healthcare hospitals, psychiatric hospitals, residential centers, professional can offer to treat an eating disorder and outpatient-care facilities. We surveyed treatment whether or not he/ she has experience or training in facilities nationwide to obtain information about their this specific area. Therefore, it is important to ask a treatment philosophies, treatment approach, years of prospective therapist about his/her knowledge about experience, and the clinical and support services they eating disorders and years of experience treating offer. The information is available in a searchable database, www.bulimiaguide.org. This database focuses on facilities offering any or all levels of care Factors Affecting Choice of Treatment Center
(see the tool explaining Treatment setting and levels of care). It does not include a listing of individual For insured patients, the choice of a treatment center therapist outpatient practices. For information on may be dictated by the beneficiary's health insurance outpatient-only therapists, go to the "treatment plan. Health insurers should provide a list of in- referral" source at www.nationaleatingdisorders.org; network (covered) treatment centers. If the treatment www.something-fishy.org/treatmentfinder; or center is outside of the health insurer's system (out-of- www.edreferral.com. network), the insurer might pay a percentage of the treatment costs leaving the patient responsible for the remainder. It is best to negotiate this percentage with the insurer before starting treatment. A small number of treatment centers offer financial assistance; but most do not. However, inquiring about treatment scholarships, as they are termed, may be worth investigating if the patient does not have financial resources or insurance.
NEDA TOOLKIT for Parents
Costs aside, other factors may be important to the Professionals in a Multi-disciplinary Care
patient in selecting a treatment center: the treatment center's philosophy (or religious affiliation, if any), multidisciplinary approach to care, distance from Primary care physician (i.e., family doctor, internal home, staff/patient ratio, professional qualifications of medicine doctor, pediatrician, gynecologist) staff, their experience in treating eating disorders, and Psychiatrist adjunct therapies offered. Some treatment centers Nutritionist provide therapies in addition to psychiatric counseling Clinical psychologist and pharmacotherapy, like equine therapy, massage, Psychopharmacologist (psychiatrist, clinical dance, or art therapy. These therapies may be psychologist, or pharmacologist with special appealing, although you may want to consider knowledge about medications used for mental whether they're covered by your health insurance. Social worker Some important questions to ask treatment centers Claims advocate for reimbursement are provided at the end of this document. If you are Other professionals who administer supplemental considering traveling some distance to a center, you services such as massage, yoga, exercise may want to ask these questions by phone before you programs, and art therapy invest the time and expense in traveling. Also, if the patient is going to enter some type of facility, knowing how the facility plans for discharge is important. Discharge plans can be complicated and require much coordination of care among different healthcare providers. That takes time. Effective discharge planning needs to start much earlier than a day or two before the patient is expected to be discharged from a Also important in your considerations are the type of care team a facility typically uses. Below is a list of the types of professionals that are generally recommended to be on the care team to ensure well- rounded care. Once a treatment facility decision has been made, there is another checklist of questions in a separate document in this toolkit—Questions to ask the care team—that you may want to ask the care Lastly, there are some questions a family may want to ask the treatment facility and care team separately (i.e., not in the presence of the patient). We have created a separate checklist in another document in the Parent Toolkit: Questions parents may want to ask treatment providers privately. Depending on the patient's age, you may need written permission to speak about the patient with a treatment facility or member of the care team.
NEDA TOOLKIT for Parents
Questions to Ask When Seeking a Treatment Center
Does the center accept the patient's insurance? If Who will the patient have the most contact with so, how much will it cover? on a daily basis? Does the center offer help in obtaining What is the mealtime support philosophy? reimbursement from the insurer? Who will update key family or friends? How often? Does the center offer financial assistance? How is care coordinated for the patient inside the How long has the center been in business? center and outside if needed? What is its treatment philosophy? How does the center communicate with the Does the center have any religious affiliations and patient's family doctors and other doctors who what role do they play in treatment philosophy? may routinely provide care? Does the center provide multidisciplinary care? What are your criteria for determining whether a Is the location convenient for the patient and patient needs to be partially or fully hospitalized? his/her support people who will be involved What happens in counseling sessions? Will there through recovery? be individual and group sessions? If the location is far away for in-person family Will there be family sessions? participation, what alternatives are there? How does the care team measure success for the What security does the facility have in place to protect patients? How do you decide when a patient is ready to How quickly will you complete a full assessment How is that transition managed with the patient Prior to traveling to the treatment center: what are your specific medical criteria for admission What after-care plans do you have in place and at and will you talk with my insurance company what point do you begin planning for discharge? before we arrive to determine eligibility for What follow-up care after discharge is needed and who should deliver it? What is expected of the family during the person's Does the patient have a follow-up appointment in hand before being discharged? Is the follow-up Anorexic specific: Please describe your strategy for appointment within 7 days of the discharge date? accomplishing refeeding and weight gain, and When is payment due? please include anticipated time frame. What are the visiting guidelines for family or Key Sources
ECRI Institute Bulimia Resource Guide What levels of care does the center provide? Please define criteria for each level mentioned. ECRI Institute interviews with families and treatment What types of professionals participate on the care team and what is each person's role? What are the credentials and experience of the How many hours of treatment are provided to a patient each day and week? Which professional serves as team leader? What types of therapy does the center consider essential? Optional? What is the patient-staff ratio? What is the rate of turnover (staff resigning) for How is that handled with patients?
NEDA TOOLKIT for Parents
Treatment settings and levels of care
Several types of treatment centers and levels of care are available for treating eating disorders. Knowing the
terms used to describe these is important because insurance benefits (and the duration of benefits) are tied not
only to a patient's diagnosis, but also to the type of treatment setting and level of care.
Treatment is delivered in hospitals, residential
Psychotherapy and drug therapy are available in all treatment facilities, and private office settings. Levels the care settings. Many settings provide additional of care consist of acute short-term inpatient care, care options that can be included as part of a tailored partial inpatient care, intensive outpatient care (by treatment plan. Support groups may help a patient to day or evening), and outpatient care. Acute inpatient maintain good mental health and may prevent relapse hospitalization is necessary when a patient is after discharge from a more intensive program. medically or psychiatrically unstable. Once a patient is medically stable, he/she is discharged from a hospital, The intensity and duration of treatment depends on: and ongoing care is typically delivered at a subacute insurance coverage limits and ability to pay for care residential treatment facility. The level of care in such a facility can be full-time inpatient, partial severity and duration of the disorder; inpatient, intensive outpatient by day or evening, and mental health status; and outpatient. There are also facilities that operate only coexisting medical or psychological disorders. as outpatient facilities. Outpatient psychotherapy and medical follow-up may also be delivered in a private A health professional on the treatment team will make treatment recommendations after examining and consulting with the patient. The treatment setting and level of care should complement the general goals of treatment. Typically, Criteria for treatment setting and levels of
to medically stabilize the patient; help the patient to stop destructive behaviors (i.e., restricting foods, binge eating, Inpatient
purging/nonpurging); and Patient is medically unstable as determined by: Unstable or depressed vital signs address and resolve any coexisting mental health problems that may be triggering the behavior. Laboratory findings presenting acute health risk Complications due to coexisting medical problems Patients with severe symptoms often begin treatment such as diabetes as inpatients and move to less intensive programs as Patient is psychiatrically unstable as determined by: symptoms subside. Hospitalization may be required Rapidly worsening symptoms for complications of the disorder, such as electrolyte Suicidal and unable to contract for safety imbalances, irregular heart rhythm, dehydration, severe underweight, or acute life-threatening mental Residential
breakdown. Partial hospitalization may be required Patient is medically stable and requires no intensive when the patient is medically stable, and not a threat medical intervention. to him/ herself or others, but still needs structure to continue the healing process. Partial hospitalization Patient is psychiatrically impaired and unable to programs last between 3 and 12 hours per day, respond to partial hospital or outpatient treatment. depending on the patient's needs.
NEDA TOOLKIT for Parents
Patient is medically stable but: Eating disorder impairs functioning, though without immediate risk Needs daily assessment of physiologic and mental Patient is psychiatrically stable but: Unable to function in normal social, educational, or vocational situations Engages in daily binge eating, purging, fasting or very limited food intake, or other pathogenic weight control techniques Intensive Outpatient/Outpatient
Patient is medically stable and: No longer needs daily medical monitoring Patient is psychiatrically stable and has: Symptoms under sufficient control to be able to function in normal social, educational, or vocational situations and continue to make progress in recovery These criteria summarize typical medical necessity criteria for treatment of eating disorders used by many healthcare facilities, eating disorder specialists, and health plans for determining level of care needed. Please see Questions to Ask a Treatment Center for additional help in determining a suitable treatment
NEDA TOOLKIT for Parents
Questions to ask the care team at a facility
Some of these questions pertain to particular eating disorders; some pertain to particular treatment settings; and some pertain to any eating disorder and all settings. What are the names, roles, titles, and contact When do you begin discharge planning? Do you information of those who will treat my family schedule and give the patient a specific follow-up appointment date/time at discharge? What other professionals will be involved in the How do you follow up if the patient does not show up for a scheduled appointment? What treatment plan do you recommend? Do you What are your criteria for determining whether and use current published clinical guidelines to guide when a patient needs to be hospitalized? treatment? If so, which guidelines? What happens in counseling sessions? Will there be What's your prognosis for the patient's chance of a individual and group sessions? Will there be family full recovery? How long might it take? How do you measure success? If I become very concerned about the patient, who What specific goals will be set for the treatment How long does each counseling session last? How Is there any psychiatric diagnosis in addition to the many will there be? How often will they happen? eating disorder? How will it be treated? What contact can the patient have with family and What physical/medical complications need friends through the course of treatment? ongoing treatment? What are we permitted to bring when visiting? What will the sequence of treatments be? What are we not permitted to bring? Are there alternative or adjunct treatments you How will you help us prepare for the patient's What benefits and risks are associated with the What should we do and who should we contact in recommended treatments and alternatives? the event of a partial or complete relapse? How can I best help my family member during What books, websites, or other sources of treatment? What is my role within the treatment? information would you recommend? How often will you talk to me about my family member's progress? What if my family member doesn't want to participate in therapy? What are your admissions criteria for residential, inpatient, partial hospital, intensive, and outpatient/inpatient care? How much weight gain should be expected in what time period for anorexia? What can I do to support my family member during a time of weight gain? Who should monitor refeeding and/or weight status? What procedures should we follow for How do family members determine whether purge behavior is occurring at home? What should we do if we notice this behavior? If my family member is being treated as an outpatient, how do you decide if more intensive intervention is needed? How often do team members communicate with each other? (Even if the team doesn't talk to each other, you can serve as a liaison to relay
NEDA TOOLKIT for Parents
Questions to ask when interviewing a therapist
What is your experience and how long have you What happens in counseling sessions? If a been treating eating disorders? particular session is upsetting for my child, will How are you licensed? What are your training you advise me on how best to support my child? credentials? Do you belong to the Academy for How long does each counseling session last? How Eating Disorders (AED)? AED is a professional many will there be and how often? group that offers its members educational How often will you meet with me/us as parents? trainings every year. This doesn't prove that How do you involve key family members or individuals are up-to-date, but it does increase the What specific goals will be set for treatment and How would you describe your treatment style? how will they be communicated? Many different treatment styles exist. Different How and when will progress be assessed? approaches may be more or less appropriate for How long will the treatment process take? How your child and family depending on your child's do you know when recovery is happening and situation and needs. therapy can stop? What kind of evaluation process do you use to Do you charge for phone calls or emails from recommend a treatment plan? Who all is involved patients or family between sessions? If so, what do in that planning? you charge and how and to whom (insurance What are the measurable criteria you use to assess company or patient) is that billed? how well treatment is working? Can you give me a Will you send me written information, a treatment plan, treatment price, etc.? The more information Do you use published clinical practice guidelines the therapist or facility is able to send in writing, to guide your treatment planning for eating the better informed you will be. Do you deal directly with the insurer or do I need What psychotherapeutic approaches and tools do When is payment due? How do you treat coexisting mental health Are you reimbursable by my insurance? What if I conditions such as depression or anxiety? don't have insurance or mental health benefits How do you decide which approach is best for the under my health care plan? patient? Do you ever use more than one It is important for you to research your insurance What kind of medical information do you need? coverage policy and what treatment alternatives are Will a medical evaluation be needed before my available in order for you and your treatment provider child begins treatment? to design a treatment plan that suits your coverage. How will you work with my child's other doctors, such as medical doctors, who may need to provide With a careful search, the provider you select will be helpful. If the first time you meet is awkward, don't be How often will you communicate with them? Will you work with my child's school and discouraged. The first few appointments with any teachers? How often do you communicate with treatment provider can be challenging. It takes time to build trust when you are sharing highly personal Will medication play a role in my child's information. If you continue feeling that a different therapeutic environment is needed, consider other Do you work with a psychopharmacologist if medication seems indicated or do I find one on my What is your availability in an emergency? If you are not available, what are my alternatives? What are your criteria for determining whether a patient needs to be hospitalized? What is your appointment availability? Do you offer after work or early morning appointments?
NEDA TOOLKIT for Parents
Questions parents may want to ask treatment providers
Appropriate support from parents and family is crucial to the treatment process and recovery. Below are some questions you can ask the treatment provider (at an eating disorder facility or private practice) to assist you in providing the best support possible for your loved one. Remember you may need to be proactive to help Is it wise for a recovering patient to have a job ensure the communication process flows smoothly. related to food or exercise? And don't forget to find support for yourself! As a How should I involve my family member in meal parent, family member, or friend it's easy to overlook planning, preparation, and food shopping? the self-care you need as you focus on your loved How much weight gain should be expected in one's recovery. National Eating Disorders Association's what time period with anorexia nervosa? (NEDA's) treatment referral resource on the website What support can I offer during a time of weight lists family support groups, though you can ask the treatment provider helping your loved one to make a Is it my responsibility to monitor refeeding and/or weight? What procedures should I follow for How can I best support my child/family member How do family members determine if purge during treatment? behavior is occurring in the home setting? What is my role? What action should I take if we notice this How often can I discuss progress with you? What should be done if my child/family member If I become anxious or notice problems, who does not want to participate in treatment? Can my child/family member be admitted to a My family member doesn't want anyone to know facility against her/his will? If so, under what about the illness. I do because it would help me to share about the illness with select, carefully How should I prepare for our family member's chosen, discrete people in our lives. They could be supportive, but I'm afraid that my family member What books, websites, or other resources do you might see them as spies. What should I do? How can I tell if a relapse is occurring? What If the patient is age 18, and often even younger, parents will need written permission from the patient If my family member receives outpatient to discuss his/her situation with a healthcare provider treatment, how will you decide if more intensive (professional or facility). treatment is needed? If I have concerns about how it's going, who What limits should be placed on exercise? What distinguishes compulsive from healthy exercise? Are there any special first-aid items such as Gatorade® or Pedialyte® that I should keep on hand to help with bulimia-related emergencies? How can I encourage "safe" food choices? What if my family member shuts me out of talking Will my family member be in group treatment with people of similar age/sex? What kind of food- related supervision should I provide? If my family member is fascinated by cooking, nutrition, or fitness, should those interests be
NEDA TOOLKIT for Parents
Find eating disorder treatment
Online databases and telephone referral lines are available to help families find a suitable treatment setting.
Excellent resources are listed below
Treatment Center Databases to Search
The database contains listings from individual therapists, dieticians, treatment centers, and other Treatment center listings can be accessed from the professionals worldwide who treat eating disorders. NEDA homepage. This database contains listings from Open the "treatment finder" tab on the left, and search professionals who treat eating disorders. Simply open by category (type of treatment), country, state, area the treatment referral tab and agree to the disclaimer. code, name, services, description, or zip code. Find an eating disorders treatment provider who will serve your state, a nationwide list of What to Consider When Searching for a
inpatient/residential treatment facilities, search for Treatment Center
free support groups in your area or locate a national Eating Disorders Research Study. Several considerations enter into finding a suitable treatment setting. Options may be limited by factors Bulimia Guide
such as insurance coverage, location, or ability to pay for treatment in the absence of insurance. When contacting treatment centers, be sure to talk with This database focuses on U.S. centers that treat all them to find out their complete admission criteria and types of eating disorders (not just bulimia) and offer whether your loved one meets their criteria for various levels of care and many types of treatment treatment. That way, you can better ensure that your from standard to alternative. On this website, you can loved one will meet their criteria before traveling. browse center listings by state, type of treatment Arriving at a center only to find out, after they take offered, whether or not they accept insurance, or other sufficiently detailed patient intake information, that characteristics by selecting from the drop-down lists. they won't admit your loved one is a situation you'll Some states have no eating disorder treatment want to prevent. Primary care physicians (i.e., family centers, and that's why no listings come up for some doctor, gynecologist, pediatrician, internal medicine states. This information was compiled from detailed doctor) may be able to assist in referring patients to questionnaires sent to every center to gather appropriate treatment facilities, because they may information about its treatment philosophies, have experience with various centers or outpatient approaches, staffing, and the clinical and support services it offers. The amount of information centers provided varies widely among centers. This database Telephone Referral and Information
does not contain listings for individual outpatient Helplines
therapists who claim to treat eating disorders. NEDA Helpline 800.931.2237
Something Fishy 866.690.7239
Hope Line Network 800.273.TALK
National Suicide Hotline 800.784.2433
National Call Center for At-Risk Youth 800.USA.KIDS
NEDA TOOLKIT for Parents
How to take care of yourself while caring for a loved one
with an eating disorder
Take time for yourself. Keep in mind that what you Remind yourself daily that you are doing the best do is a much more powerful message than what for your child or family member. Keeping a journal you say. Being a good role model for your child or can help— making a self-commitment to jot down family member during the healing process means one positive thought each day can help. taking care of your own physical, emotional, and spiritual needs. Find support in what others are saying – join a local or online support group. If you are married or in a significant relationship, spend time on that relationship. Talk daily to your Say "No" when you can. Give yourself a break. partner about your feelings and frustrations. Take Don't take on any added responsibilities at this time for a hug. If time allows, make a date for something you both enjoy to have fun. Explore your options if you think you may need to Seek support from family, friends, and/or leave work temporarily to provide full-time care. professionals whom you find to be helpful. Allow Learn about the Family and Medical Leave Act yourself to be cared for. (FMLA). FMLA provides job protection for employees who must leave their job for family Ask for help with the mundane. It makes your medical concerns. friends feel useful and keeps you from becoming isolated. Make a list of things you can use help with: laundry, errands, lawn care, housecleaning, meals for the rest of the family. If someone says, "Let me know if there is anything I can help with," show them your list of unassigned tasks. Ask what
NEDA TOOLKIT for Parents
Parents of children of legal age or friends of a person
Other documents worth knowing about include a with an eating disorder may want to help navigate medical POA, which lets someone make medical insurance issues and finding treatment facilities, or decisions about the patient's healthcare if the patient participate in treatment, but cannot talk with health is incapable of making these decisions. professionals or facilities on a patient's behalf without The rules about medical POAs vary by state and it's the patient's permission because of certain regulations best to consult a lawyer to write one. Advanced protecting medical privacy. The Health Insurance directives are another set of documents that the Portability and Accountability Act of 1996, or HIPAA, patient authorizes for future treatment in case the protects individuals' medical records from becoming patient cannot make decisions at that time. Most public knowledge. HIPAA states that under normal hospitals have forms for patients to fill out to specify circumstances, medical records are private and that anyone with access to them, like healthcare professionals, healthcare facilities, or insurers, cannot In most states parents have medical POA over their share that medical information with anyone but the children as long as the children are younger than age patient. HIPAA protection also extends to human 18 although the exact regulations depend on the state. resources (HR) departments at employers. If a person Parents do not have medical or durable POA over discloses his/her medical condition to HR personnel children who are older than age 18, even if the when talking about health insurance benefits, HR is children are covered under the parents' health required to maintain confidentiality. If HR divulges insurance policy. If a child is in college, is over age 18, information without permission, the harmed party can but is still covered by the parents' insurance, then the file a civil rights complaint. HIPAA requires companies parents and child must go through the usual legal to have policies that provide for sanctions against any process to set up POA. This can be a problem if the HR person who releases confidential medical child does not want treatment or is at odds with the information. The Americans with Disabilities Act may parents, which is sometimes the case. Parents have no provide recourse for anyone fired from a job because legal authority to force a legally adult child into of a medical condition. If a friend or family member is helping a patient through the treatment process, the patient can give oral permission for that person to see the patient's records and participate when talking with healthcare providers or insurers. That person may also make doctors' appointments for the patient. A friend or family member cannot see a patient's medical files or transport the files or lab samples if the patient is absent, even if permission has been given orally. To grant a friend or family member access to medical records, the patient must provide a durable power of attorney (POA) document. This document varies by state so it's best to have a lawyer create it. Anyone with a POA can sign legal documents for the patient and read or transport medical records in the patient's
NEDA TOOLKIT for Parents
NEDA TOOLKIT for Parents
Navigating and Understanding Health Insurance Issues
This guidance is intended to assist people looking for help when accessing care and when insurance denies coverage for treatment of eating disorders. The information here was compiled from research by ECRI Institute and the experience of parents and treatment providers who have had experience obtaining coverage for eating disorders care. In a separate document are sample letters to adapt to Another issue is the level of benefits for mental various insurance situations related to obtaining healthcare. For years, many health plans provided few appropriate care. This information has not been or no mental health benefits. When they did, most prepared by attorneys and is not intended as a legal subcontracted those benefits through "mental health document. This information does not guarantee carve-out" plans. Such plans are administered by success. If you have suggestions, feedback, or personal behavioral health service companies that are separate additions to share (e.g., submit a sample letter you've from health plans. This approach made well-rounded used with your insurance company with all identifying care by a multidisciplinary team very difficult to information removed), please email National Eating achieve. Even when a psychotherapist and medical Disorders Association at doctor want to integrate services and case firstname.lastname@example.org with "Insurance management to treat the patient as a whole person, Issues" in the subject line. the healthcare delivery system in the United States poses barriers that prevent that from happening. The National Eating Disorders Association fields many questions every day that focus on how to gain access For example, when a service is provided by a doctor or to care and navigate insurance issues. While there is facility, a billing code is needed to obtain little argument that early intervention offers the best reimbursement for services. Certain rules and chance for recovery, insurance and the healthcare regulations govern how services must be coded and system can pose barriers to accessing prompt, who can perform those services. Different types of comprehensive treatment. facilities and different healthcare professionals must use codes that apply to that type of facility and health Accessing the full benefits a patient is entitled to professional. Also, if codes don't exist for certain under his/her health plan contract requires services delivered in a particular setting, then facilities understanding a few things about all the factors that and health professionals have no way to bill for their affect access to care, coverage, and reimbursement. services. Codes used for billing purposes are set up by Navigating the system to find out what the patient is various entities, such as the American Medical entitled to receive also takes a lot of energy. While Association, U.S. Medicare program, and the World parents can legally act on behalf of children younger Health Organization's International Classification of than age 18, they need permission from a child older Diseases. Thus, even a patient with good health than age 18 to act on his/her behalf. insurance may face barriers to care simply because of the way our healthcare system is set up. Because treatment usually involves both mental healthcare and medical care aspects, a well-rounded The system is slowly changing. Sporadic improvements care plan must address both types of care. The overall have come about as a result of lawsuits and state healthcare system has long treated medical care and legislation prompted by individuals, legislators, mental healthcare separately. The result of that care clinicians, support groups, and mental health model is that health insurer benefits plans have often advocacy groups. The U.S. federal government and followed suit by separating mental health benefits most U.S. states have passed some form of mental (also called behavioral health benefits) from medical health parity law. Generally these laws require benefits. This split has created great difficulty for insurers to provide benefits for mental healthcare that people with an eating disorder because they need an are equivalent to benefits for medical care. These laws integrated care plan. Ways to steer through these do, however, vary widely in their provisions. difficulties are offered here in an 8-step plan.
NEDA TOOLKIT for Parents
Landmark lawsuits brought by families of patients with bulimia nervosa and/or anorexia in two states— Wisconsin in 1991, and Minnesota in 2001—were watershed events that set legal precedents about what insurers should cover for eating disorders. These lawsuits also raised public awareness of the problems faced by people seeking coverage for treatment of eating disorders. Nonetheless, the system today has a long way to go to improve access to care and adequate reimbursement for care for a sufficient period for a patient with an eating disorder. Given that appropriate well-integrated treatment for eating disorders can easily cost more than $30,000 dollars per month, even with insurance, an insured individual is usually responsible for some portion of The first-line of decision making about health plan benefits is typically made by a utilization review manager or case manager. These managers review the requests for benefits submitted by a healthcare provider and determine whether the patient is entitled to benefits under the patient's contract. These decision makers may have no particular expertise in the complex, inter-related medical/mental healthcare needs for an eating disorder. Claims can be rejected outright or approved for only part of the recommended treatment plan. Advance, adequate preparation on the part of the patient or the patients' support people is the best way to maximize benefits. Prepare to be persistent, assertive, and rational in explaining the situation and care needs. Early preparation can avert future coverage problems and situations that leave the patient holding the lion's
NEDA TOOLKIT for Parents
Steps to maximize insurance benefits
A spouse, partner, friend, or other person who wants to act on behalf of the patient will need to have the Read the other information in the Parent Toolkit to patient sign appropriate authorizations. Medical learn about eating disorders, treatment, current confidentiality is discussed later in this section. clinical practice guidelines, and how you can best advocate for and support the family member who has Read the patient's entire insurance benefits
an eating disorder. Refer to the latest evidence-based manual carefully to understand the available
clinical practice guidelines in this toolkit and have benefits
them in hand when speaking to your health plan about benefits. Be prepared to ask your health plan Obtain a copy of the full plan description from the for the evidence-based information they use to create health plan's member's website (i.e., the specific plan their coverage policy for eating disorders. that pertains to the insured), the insurer or, if the insurance plan is through work, the employer's human Find out if your state has a mental health parity law or resources department. This document may be longer mandate and what the terms of that law or mandate than 100 pages. Do not rely on general pamphlets or are. Mental health parity simply means that your policy highlights. Read the detailed description of the insurance company must not limit mental health and benefits contract to find out what is covered and for substance abuse healthcare by imposing lower day how long. If you can't understand the information, try and visit limits, higher copayments and deductibles, talking with the human resources staff at the company and lower annual and lifetime spending caps than that the insurance policy comes through, with an they do for medical care. The website insurance plan representative (the number is on the www.bulimiaguide.org has detailed information about back of your insurance identification card), or with a which states have mental health parity laws or billing/claims staff person at facilities where you are mandates and what those laws and mandates cover. considering obtaining treatment. If hospital See the Eating Disorders Coalition for Research, Policy emergency care is not needed, make an appointment & Action web site for how to get involved in the effort with a physician you trust to get a referral or directly to influence federal policy at: contact eating disorder treatment centers to find out how to get a full assessment and diagnosis. The assessment should consider all related physical and Get organized
psychological problems (other documents in this toolkit explain the diagnostic or assessment process If a patient's first encounter with the healthcare and testing). The four main reasons for doing this are: system is admission to an emergency room for a life- threatening situation with an eating disorder, whoever To obtain as complete a picture as possible about is going to deal with insurance issues on the patient's everything that is wrong behalf will need to get organized very quickly to To develop the best plan for treatment figure out how to best access benefits. Patients who To obtain cost estimates before starting treatment are seriously medically compromised will likely be in To obtain the benefits the patient is entitled to the hospital for a few days before discharge to under his/ her contract for the type of care outpatient care or a residential eating disorder center. needed—for example, many insurers provide Those few days are critical to negotiating more coverage benefits for severe mental disorder reimbursement for the longer-term care. diagnoses. Some insurers categorize anorexia and If the situation is not an acute emergency and you bulimia nervosa as severe disorders that qualify want to find a treatment center, consider whether you for extensive inpatient and outpatient benefits, have authority to act on the patient's behalf or while others may not. whether the patient must give you written authority to act on his/her behalf. If a child is 18 years of age or older, parents will need the child's written permission to act on the child's behalf. Healthcare providers have forms that require signatures to allow free flow of communication and decision making.
NEDA TOOLKIT for Parents
Medical benefits coverage also often comes into play This will improve your chance of getting one contact to treat eating disorder-associated medical conditions, person to talk with over the longer term of treatment so diagnosing all physical illnesses present is who better understands the complexities of treatment. important. Other mental conditions often coexist with Confirm with the insurer that the patient has benefits an eating disorder and should be considered during for treatment. Also ask about "in-network" and "out-of- the assessment, including depression, trauma, network" benefits and the eating disorder facilities obsessive compulsive disorder, anxiety, social phobias, that have contracts with the patient's insurance and chemical dependence. These coexisting company, because this affects how much of the costs conditions can affect eligibility for various benefits the patient is responsible for. If the insurer has no (and often can mean more benefits can be accessed) contract with certain treatment facilities, benefits may and eligibility for treatment centers. still be available, but may be considered out-of- network. In this case, the claims will be paid at a lower Keep careful and complete records of
rate and the patient will have a larger share of the bill. communications with the insurance company
and healthcare providers for future reference
You may also want to consider having an attorney in mind at this point in case you need to consult as needed
someone if roadblocks appear; however, avoid an adversarial attitude at the beginning. Remember to From the first call you make, keep a complete record keep complete written records of all communications of your conversation. Treatment often occurs over a with every person you speak with at your insurance long period of time. Maintaining a log book—whether company. Other things to remember: computerized or in hard copy—can be important for future reference if there are questions about claims. Thank and compliment anyone who has assisted Decide where all notes and documentation will be kept for easy access. Create a back-up copy of You're more likely to receive friendly service when everything, and keep it in a safe and separate place. you are polite while being persistent. The record log of conversations should contain the Send important letters via certified mail to ensure they can be tracked and signed for at the recipient Notes taken of each conversation with an insurer Set a timeframe and communicate when you or healthcare provider would like an answer. Make follow-up phone calls Date, time, name, and title of person with whom if you have not received a response in that Person's contact information Don't assume one department knows what the other department is doing. Copy communications As a courtesy, you may wish to let the people you talk to all the departments, including health, mental with know that you are keeping careful records of health, enrollment, and other related your conversations to help you and the patient remember what was discussed. If you decide to tape Don't panic when and if you receive the first record any conversation, you must first inform and ask denial. Typically, a denial is an automatic the permission of the person with whom you are computer-generated response that requires a "human override." Often you need to go up at least one level, and perhaps two levels, to reach the Call the insurer to discuss benefits options
decision maker with authority to override the automated denial. With documentation of the patient's diagnosis and Your insurance company only knows what you and proposed care plan in hand, it's a good idea to call the the treating professionals tell them. Make sure insurance company before the patient formally enters they have all information necessary to make a treatment program. Quite often, preauthorization for decisions that will be of most benefit to you or a treatment facility or healthcare provider is needed. Ask for a case manager who has credentials in eating Make no assumptions. Your insurance company is not the enemy – but may be uninformed about your case. Treat each person as though he/she has a tough job to do.
NEDA TOOLKIT for Parents
Be aware that if the patient is a college student who Not all health plans will do this, but some do, so it's had to drop out of school to seek treatment and was worth asking. Going this route can save the behavioral covered by school insurance or a parent's insurance health benefits for the time when the patient is better policy, the student may no longer be covered if not a able to take part in the psychotherapy. full-time student. While many people will continue working or attending school, some cannot. If this is the Another way to get the most out of benefits is to find case, it's important to understand what happens with out whether chemical dependency or substance abuse insurance. Most insurance policies cover students as benefits are included in the mental health day long as they are enrolled in 12 credit hours per allotment or if it is a separate benefit. If it is separate semester and attend classes. Experts in handling and the patient does not really need this benefit, find insurance issues for patients with eating disorders out whether the insurer will "flex" the benefit to apply caution that patients who have dropped out of school it for treating an eating disorder. should avoid trying to cover up that fact to maintain benefits, because insurance companies will usually Find out the authorizations for care that the
find out and then expect the patient to repay any insurer requires for the patient to access
benefits that were paid out. If coverage has been lost, the student may be eligible to enroll in a Consolidated Omnibus Budget Once insurance benefits are confirmed, be sure to Reconciliation Act (COBRA) insurance program. obtain the health plan authorizations required for COBRA is an Act of Congress that allows people who reimbursement for the care the patient will receive. have lost insurance benefits to continue those benefits Sometimes authorizations and referrals are sent as long as they pay the full premium and qualify for electronically to the concerned parties. Always the program. See www.cobrainsurance.com for more confirm that they have been sent and received by the information. A person eligible for COBRA has only 30 appropriate parties. Ask for the level-of-care criteria days from the time of loss of benefits to enroll in a the patient must meet to be eligible for the various COBRA plan. It is critical that the sign up for COBRA be levels of benefits. Again, keep a record of the done or that option is lost. Be sure to get written authorizations received. confirmation of COBRA enrollment from the plan. If the student is not eligible for COBRA, an insurance Communicate with key caregivers to give any
company may offer a "conversion" plan for individual needed input and devise a treatment plan.
Obtain the names of the people who will be providing If the patient is in the hospital and will be discharged care and having daily interactions with the patient to a residential treatment center, discuss how the (including lower-level staff such as aides). Try to meet medical and behavioral health components of with, or talk by phone, to each caregiver on the team. benefits will work. Although a patient may be Discuss the diagnosis (and whether there is more than "medically stable" at discharge, he/she may not be one primary diagnosis) and treatments options, and nearly well enough to participate fully in ask whether there is clinical evidence to support the psychotherapy at the residential center. The patient's recommended treatment and what that evidence is. medical condition, though not life-threatening at this point, affects mental health and ability to participate in treatment. Restoring physical health may take days or weeks. Therefore, before the patient is admitted to a residential eating disorder center or placed in outpatient treatment, contact the patient's health plan or employer (if applicable and the health plan is self- funded by the employer) and ask for the early claims for psychotherapy to be paid under the medical benefits instead of the behavioral health benefits. The language to use is: "Will you intercept psychotherapy claims and pay them under medical benefits until the patient is stable enough to participate fully and assist in her treatment?"
NEDA TOOLKIT for Parents
This information can be useful when talking to the Enlist support from family members and
insurance company about benefits, because insurance companies value evidence-based care. Also, ask how friends you can count on.
the treatment plan will be coordinated and managed, and who will coordinate the plan. In the case of Make a list of people you can count on for moral bulimia nervosa, the patient often has close to normal support throughout the course of treatment. Keep body weight. However, serious, but less obvious their names, phone numbers, and email addresses medical conditions may also be present (e.g., handy. For this list, identify people who can help the osteoporosis, heart problems, kidney problems, brain patient remain focused and provide helpful emotional abnormalities, diarrhea, reflux, nausea, malnutrition, support and encouragement while navigating the heartburn). Tests that are used to diagnose medical system to obtain care and while receiving care. Find symptoms and criteria for levels of care are listed in out from each of them their availability (i.e., times, First steps to getting help in this toolkit. Ask for "letters dates) for support and the kind of support they can of support" from the healthcare team. See Sample offer. Also consider distributing that list among key letter #6 in Sample letters to use with insurers in this people on the list so they know who is in your support toolkit. Using language that is used by insurance network. Also, list key healthcare provider (facilities companies is helpful to have common ground. For and healthcare providers) contact numbers on that list example, it's important to point out care that is in the event of an emergency. considered by the doctors to be "medically necessary" for the patient's recovery. Documentation like this is useful to provide to the insurer when discussing reimbursement, because it gives both you and the insurer a framework for discussion. With regard to the healthcare providers, ask them how to and who can obtain copies of the patient's medical records, who will provide progress reports, how often they will provide them, and to whom. Ask the healthcare provider (whether a facility or individual therapist) for an itemization of the estimated costs of care, which costs will likely be paid by the insurer, and which costs will be paid by the patient. Also ask how billing for reimbursement will be handled—ask whether you have to submit claims or whether the healthcare service provider submits the claims on the patient's behalf.
NEDA TOOLKIT for Parents
COBRA rights checklist
This is a list of requirements that employers must follow to inform their group health plan beneficiaries
(employees, spouses, dependents) of their rights under the Consolidated Omnibus
Budget Reconciliation Act (COBRA).
Payment of COBRA premiums
Model general and election notices available at Premiums are due the first of the coverage month. An administrative charge may be added to the General Rights Notice (must be sent within 90 monthly premium. There is a 30-day grace period days of enrollment into a group health plan - to make payments. This begins on the second day health, dental, vision, flexible spending account) of the coverage month. For example, September's Specific Rights Notice (Election notice - the plan grace period expires on October 1, not September administrator must provide the notice within 14 days after receiving notice of a qualifying event) Conversion Rights Notice (must be sent 180 days Reasons for terminating COBRA coverage
prior to the end of the maximum continuation The maximum continuation period has been Notice of Unavailability (must be sent when the plan administrator denies coverage after receiving The Qualified Beneficiary fails to make a timely notice and explain why continuation coverage is COBRA premium payment. The Qualified Beneficiary is covered under Notice of Termination of COBRA Rights (must be another group health plan AFTER the election of sent when COBRA coverage terminates before the end of the maximum COBRA period) The Qualified Beneficiary is no longer disabled after the start of the 11-month extension has Enrollment into group health plan
The Employer ceases to provide any group health Send General COBRA notice addressed to covered coverage to any covered employee. employee and spouse, if applicable, to home The Qualified Beneficiary has become entitled to address within 90 days of enrollment into group Medicare, part A or B (For purposes of Medicare, ELIGIBLE means the person has attained the age Send General COBRA notice to covered spouse if of 65. ENTITLEMENT means the person has added during open enrollment or qualified event actually become enrolled under Medicare). Types of qualifying events for COBRA
During open enrollment, the same information Employee Termination and enrollment options must be communicated to Employee Reduction in Hours COBRA Qualified Beneficiaries as to active Employee Death employees. This includes allowing Qualified Entitlement to Medicare Beneficiaries the ability to enroll under a new Employee Divorce or Legal Separation Loss of Dependent Child Status Length of coverage available 18 months (Employee Events) 36 months (Dependent Events) 29 months (Disability Extension periods)
NEDA TOOLKIT for Parents
Sample letters to use with insurance companies
This section provides seven sample letters to use for various circumstances you may encounter that require you to
communicate with insurance companies. These letters were developed and used by families who encountered
Keep in mind that a cordial, business communication tone is essential as discussed in Navigating and
understanding health insurance issues. Remember: Follow up letters with phone calls and document whom you speak to. Don't assume one insurance department knows what the other is doing. Don't panic! Your current issue or rejection can be a computer generated "glitch." Copy letters to others relevant to the request. Also, if you are complimenting someone for the assistance they've provided, tell them you'd love to send a copy to their boss to let him/ her know about the great service you've received. Supply supporting documents. Get a signed delivery receipt – especially when time is of the essence. Sample letters begin on the following page.
NEDA TOOLKIT for Parents
Sample Letter #1
Request that the copay for the psychiatrist from the patient be changed to a medical copay rate instead of the higher mental health copay, because the psychiatrist was providing medication management, not psychotherapy. Adjustments can be made so that the family is billed for the medical copay. Remember, the psychiatrist must use the proper billing code. To: Name of Clinical Appeals Staff Person INS. CO. NAME & ADDRESS From: YOUR NAME & ADDRESS Re: PATIENT'S NAME DOB (Date of Birth) Insurance ID# Dear [obtain and insert the name of a person to address your letter to—avoid sending to a generic title or "To Whom It May Concern"]; Thank you for assisting me with my [son's/daughter's] medical care. As you can imagine, this process is very emotionally draining on the entire family. However, the cooperation of the fine staff at [INSURANCE COMPANY NAME] makes it a little easier. At this time, I would like to request that [INS. CO.] review the category that [Dr. NAME's] services have been placed into. It appears that I am being charged a copay for [his/her] treatment as a mental health service when in reality [he/she] provides [PATIENT NAME] with pharmacologic management for [his/her] neuro-bio-chemical disorder. Obviously, this is purely a medical consultation. Please review this issue and kindly make adjustments to past and future consultations. Thank you in advance for your cooperation and assistance. [YOUR NAME] Cc: [list the people in the company you are sending copies to]
NEDA TOOLKIT for Parents
Sample Letter #2
The need to flex hospital days for counseling sessions. Remember, just because you are using outpatient services does not mean that you cannot take advantage of benefits for a more acute level of care if your child is eligible for that level of care. The insurance company only knows the information you supply, so be specific and provide support from the treatment team! 10 Hospital days were converted to 40 counseling sessions. Date: To: Name of an individual in the Ins. Co. Management Dept INS. CO. NAME & ADDRESS From: YOUR NAME & ADDRESS Re: PATIENT'S NAME DOB (Date of Birth) Insurance ID# Case # Dear [insert name]: This letter is in response to [insurance company name's] denial of continued counseling sessions for my [daughter/son]. I would like this decision to be reconsidered because [insert PATIENT NAME] continues to meet the American Psychiatric Association's clinical practice guidelines criteria for Residential treatment/Partial hospitalization. [His/Her] primary care provider, [NAME], supports [his/her] need for this level of care (see attached – Sample Letter #3 below provides an example of a physician letter). Therefore, although [he/she] chooses to receive services from an outpatient team, [he/she] requires an intensive level of support from that team, including ongoing counseling, to minimally meet [his/her] needs. I request that you correct the records re: [PATIENT NAME's] level of care to reflect [his/her] needs and support these needs with continued counseling services, since partial hospitalization/residential treatment is a benefit [he/she] is eligible for and requires. I am enclosing a copy of the APA guidelines and have noted [PATIENT NAME'S] current status. If you have further questions you may contact me at: [PHONE#] or [Dr. NAME] at: [PHONE#]. Thank you in advance for your cooperation and prompt attention to this matter. [YOUR NAME] Cc: [Case manager] [Ins. Co. Medical manager]
NEDA TOOLKIT for Parents
Sample Letter #3
Letter to a managed care plan to seek reimbursement for services that the patient received when time was
insufficient to obtain pre-authorization because of the serious nature of the illness and the need to deal with it
urgently. Remember: you need to research the professionals available through your plan and local support systems. In this case, after contacting their local association for eating disorders experts, the family that created this letter realized that no qualified medical experts were in their area to diagnose and make recommendations for their child. Keep in mind that you need to seek a qualified expert and not a world-famous expert. Make sure you provide very specific information from your research.
Reimbursement was provided for the evaluating/treating psychiatrist visits and medications. Further research and
documentation was required to seek reimbursement for the treatment facility portion. DATE To: Get the name of a person to direct a letter to INS. CO. NAME & ADDRESS From: YOUR NAME & ADDRESS Re: PATIENT'S NAME DOB (Date of Birth) Insurance ID# Case # Dear [insert name]: My [son/daughter] has been under treatment for [name the eating disorder and any applicable co-existing condition] since [month/year]. [He/she] was first seen at the college health clinic at [UNIVERSITY NAME] and then referred for counseling that was arranged through [INS. CO.]. At the end of the semester I met with my [son/daughter] and [his/her] therapist to make plans for treatment over the summer. At that time, residential treatment was advised, which became a serious concern for us. We then sought the opinion of a qualified expert about this advice. I first spoke to [PATIENT NAME'S] primary physician and then contacted the local eating disorders support group. No qualified expert emerged quickly from the community of our [INS. CO.] network providers. In my research to identify someone experienced in eating disorder evaluation and treatment, I discovered that [insert Dr.NAME at HOSPITAL in LOCATION] was the appropriate person to contact to expedite plans for our child. Dr. [NAME] was willing to see [him/her] immediately, so we made those arrangements. As you can imagine, this was all very stressful for the entire family. Since continuity of care was imperative, we went ahead with the process and lost sight of the preapproval needed from [INS. CO.]. I am enclosing the bills we paid for those initial visits for reimbursement. [PATIENT NAME] was consequently placed in a residential setting in the [LOCATION] area and continues to see Dr. [NAME] through arrangements made by [INS. CO.]. Also, at the beginning of [his/her] placement, some confusion existed about medications necessary for [PATIENT NAME] during this difficult/ acute care period. At one point payment for one of [his/her] medications was denied even though the treatment team recommended it, and it was prescribed by [his/her] primary care physician, Dr. [NAME]. I spoke to a [INS. CO.] employee [insert name] at [PHONE #] to rectify the situation; however, I felt it was a little too late to meet my timeframe for visiting [PATIENT NAME], so I paid for the Rx myself and want reimbursement at this time. If you have any questions, please speak to [employee name]. Thank you in advance for your cooperation. I'd be happy to answer any further questions and can be reached at: [PHONE] Sincerely, [YOUR NAME]
NEDA TOOLKIT for Parents
Sample Letters #4
To continue insurance while attending college less than full-time so that student can remain at home for a
semester due the eating disorder. Note: When a student does not register on time at the primary university at
which he/she has been enrolled, insurance is automatically terminated at that time. Automatic termination can cause an enormous amount of paperwork if not rectified IMMMEDIATELY. The first letter informs the insurance company of the student's current enrollment status in a timely fashion, and the second letter responds to the abrupt and retroactive termination. Students affected by an eating disorder may be eligible for a medical leave of absence from college for up to one year—so you may want to inquire about that at the student's college.
The student was immediately reinstated as a less than full-time student.
DATE To: NAME OF CONTACT PERSON INS. CO. NAME & ADDRESS From: YOUR NAME & ADDRESS Re: PATIENT'S NAME DOB (Date of Birth) Insurance ID# Case # Dear [NAME]: We spoke the other day regarding my [son's/daughter's] enrollment status. I am currently following up on your instructions and appreciate your assistance in explaining what to do. [Dr. NAME] is sending you a letter that should arrive very soon about [PATIENT NAME's] medical status that required [him/her] to reduce the number of classes [he/she] will be able to take this fall. When [he/she] completes re-enrollment at [UNIVERSITY NAME] (which is not possible to do until the first day of classes, [DATE]), [he/she] will have the registrar's office notify you of her status. At this time, [NAME] plans to be a part-time student at [UNIVERSITY] for the [DATE] semester and plans to return to [UNIVERSITY] in [DATE], provided [his/her] disorder stabilizes. If all goes well; [he/she] may be able to graduate with [his/her] class and complete [his/ her] coursework by the [DATE] in spite of the medical issues. Please feel free to get answers to any questions regarding these plans from [PATIENT NAME'S academic advisor Mr./Ms. NAME], whom [PATIENT NAME] has given written permission in a signed release to speak to you. This advisor has been assisting my [son/daughter] with [his/her] academic plans and is aware of [his/her] current medical status. The advisor's phone number and email are: [PHONE #/ email]. Please feel free to contact me at [PHONE #] if you have any questions or need any further information. Thank you for your assistance. Sincerely, [YOUR NAME]
NEDA TOOLKIT for Parents
Sample Letter #5
Follow-up letter to enrollment department after coverage was terminated retroactively to June 1st by the
insurance company's computer.
(HEADING SAME AS PREVIOUS LETTER) Dear [NAME]: I am sure you can imagine my shock at receiving the attached letter [copy of the letter you received] that my [son/daughter] received about termination of coverage. [NAME] has been receiving coverage from [INSURANCE COMPANY] for treatment of serious medical issues since [DATE]. We have received wonderful assistance from [NAME], Case Manager [PHONE#]; [NAME], Mental Health Clinical Director [PHONE#]; and Dr. [NAME], [INS. CO.] Medical Director [PHONE #]. I am writing to describe the timeline of events with copies to the people who have assisted us as noted above. In [DATE], [ PATIENT NAME] requested a temporary leave of absence from [UNIVERSITY 1 NAME] to study at [UNIVERSITY 2 NAME] for one year. [He/she] was accepted at [UNIVERSITY 2 NAME] and attended the [DATE] semester. At the end of the spring semester [PATIENT NAME'S] medical issues intensified and [PATIENT NAME] returned home for the summer. The summer of [YEAR] has been very complicated and a drain on our entire family. The supportive people noted earlier in this letter made our plight bearable but we were constantly dealing with one medical issue after another. At the beginning of August [PATIENT NAME] and the treatment team members began to discuss [PATIENT NAME's] needs for the fall semester of [YEAR]. As far as our family was concerned, all options [UNIV. 1, UNIV. 2, & several local options full and part-time] needed to be up for discussion to meet [patient name's] medical needs. We hoped that with the help of [his/her] medical team we could make appropriate plans in a timely fashion. During [PATIENT NAME's] appointments the first two weeks of August, the treatment team agreed that [PATIENT NAME] should continue to live at home and attend a local university on a part-time basis for the fall semester. This decision was VERY difficult for [PATIENT NAME] and our family. [PATIENT NAME ]still hopes/plans to return to [UNIV. 1] in [date] as a full-time student. [He/ she] has worked with [his/her] [UNIV. 1] advisor since [date] to work out a plan that might still allow [him/her] to graduate with [his/her] class even if [he/she] needed to complete a class or two in the summer of [YEAR]. This decision by [NAME] was difficult but also a major breakthrough/necessity for [his/her] treatment. After a workable plan was made, I called the enrollment department at [INS. CO. NAME] to gain information about the process of notification regarding this change in academic status due to [his/her] current medical needs. [INS. EMPLOYEE NAME] communicated to me that I needed to have my child's primary care physician write a letter supporting these plans. This letter is forthcoming as we speak. As soon as [PATIENT NAME's] fall classes are finalized on [date]' that information will also be sent to you. In summary, [PATIENT NAME] intended to be a full-time student this fall until [his/her] treatment team suggested otherwise in the early August. At that time I began notifying the insurance company. Please assist us in expediting this process. I ask that you immediately reinstate [him/her] as a policy member. If [his/her] status is not resolved immediately it will generate a GREAT DEAL of unnecessary extra work for all parties involved and, quite frankly, I'm not sure that our family can tolerate the useless labor when our energy is so depleted and needed for the medical/life issues at hand. I am attaching 1) my previous enrollment notification note; 2) [PATIENT NAME's] acceptance from [UNIV. 2]; 3) a copy of [PATIENT NAME'S] apartment lease for the year; and 4) [his/her] recent letter to [UNIV. 2] notifying them that [he/she] will be unable to complete the year as a visiting student for medical reasons. Please call me TODAY at [PHONE #] to update me on this issue. This is very draining on our family. Thank you for your assistance. Sincerely, [YOUR NAME] Cc: [CASE MANAGER, MENTAL HEALTH CLINICAL DIRECTOR, MEDICAL DIRECTOR]
NEDA TOOLKIT for Parents
SAMPLE LETTER #6
Letter from doctor describing any medical complications your child has had, the doctor's recommendations for
treatment, and the doctor's prediction of outcome if this treatment is not received. This is a sample physician letter that parents can bring to their child's doctor as a template to work from. To: [Get the name of a medical director at the insurance company]: INS. CO. NAME & ADDRESS Re: PATIENT'S NAME DOB (Date of Birth) Insurance ID# We are writing this letter to summarize our treatment recommendations for [patient name]. We have been following [patient name] in our program since [DATE]. During these past [NUMBER years], [patient name] has had [NUMBER] hospitalizations for medical complications of [insert conditions, e.g., malnutrition, profound bradycardia, hypothermia, orthostasis]. Each of the patient's hospital admissions are listed below [list each and every one separately]: Admission Date – Discharge Date [condition] In all, [patient] has spent [NUMBER] days of the past [NUMBER years] in the hospital due to complications of [his/her] malnutrition.[Patient name's] malnutrition is damaging more than [his/her] heart. [His/Her] course has been complicated by the following medical issues: List each issue and its medical consequence [e.g., secondary amenorrhea since DATE, which has the potential to cause irreversible bone damage leading to osteoporosis in his/her early adult life.] Despite receiving intensive outpatient medical, nutritional and psychiatric treatment, [patient name's] medical condition has continued to deteriorate with [describe symptoms/signs, e.g., consistent weight loss since DATE] and is currently 83% of [his/her] estimated minimal ideal body weight (the weight where the nutritionist estimates[ he/she] will regain regular menses). White blood cell count and serum protein and albumin levels have been steadily decreasing as well, because of extraordinarily poor nutritional intake. Given this history, prior levels of outpatient care that have failed, and [his/her] current grave medical condition, we recommend that [patient name] urgently receive more intensive psychiatric and nutritional treatment that can be delivered only in a residential treatment program specializing in eating disorders. We recommend a minimum 60- to 90-day stay in a tiered program that offers: intensive residential and transitional components focusing on adolescents and young adults with eating disorders (not older patients). [Patient] requires intensive daily psychiatric, psychologic, and nutritional treatment by therapists well trained in the treatment of this disease. Such a tiered program could provide the intensive residential treatment that [he/she] so desperately needs so [he/she] can show that [he/she] can maintain any progress in a transitional setting. We do not recommend treatment in a non-eating disorder-specific behavioral treatment center. [Patient]'s severe anorexia requires subspecialty-level care. Examples of such programs would include [name facilities]. Anorexia nervosa is a deadly disease with a 10% to 15% mortality rate; 15% to 25% of patients develop a severe lifelong course. We believe that without intensive treatment in a residential program, [patient name's and condition], and the medical complications that it causes, will continue to worsen causing [him/her] to be at significant risk of developing lifelong anorexia nervosa or dying of the disease. We understand that in the past, your case reviewers have denied [patient] this level of care. This is the only appropriate and medically responsible care plan that we can recommend. We truly believe that to offer a lesser level of care is medically negligent. We trust that you will share our grave concern for [patient's] medical needs and approve the recommended level of care to assist in [his/her] recovery. Thank you for your thorough consideration of this matter. Please feel free to contact us with any concerns regarding [patient's] care. Sincerely, [PHYSICIAN NAME]
NEDA TOOLKIT for Parents
SAMPLE LETTER #7
"Discussion" with the insurance company about residential placement when the insurance company suggests that
the patient needs to fail at lower levels of care before being eligible for residential treatment. In a telephone
conversation, the parents asked the insurance company to place a note in the patient file indicating the insurance company was willing to disregard the American Psychiatric Association guidelines and recommendations of the patient's treatment team and take responsibility for the patient's life. (SEND BY CERTIFIED MAIL!)
Shortly thereafter, the parents received a letter authorizing the residential placement.
To: CEO (by name) INS. CO. NAME & ADDRESS (use the headquarters) From: YOUR NAME & ADDRESS Re: PATIENT'S NAME DOB (Date of Birth) Insurance ID# Case # Dear (Pres. of INS. CO.): Residential placement services for eating disorder treatment have been denied for our [son/daughter] against the recommendations of a qualified team of experts consistent with the American Psychiatric Association's evidence- based clinical practice guidelines. Full documentation of our child's grave medical condition and history and our attempts to obtain coverage for that care is available from our case manager [name]. At this time, I would like you to put in writing to me and to my child's case file that [INS. CO.] is taking complete responsibility for my [son's/daughter's] life. [YOUR NAME] Cc: [CASE MANAGER NATIONAL MEDICAL DIRECTOR (get the names for both the medical and behavioral health divisions) NATIONAL MEDICAL DIRECTOR—Behavioral Health]
NEDA TOOLKIT for Parents
How to manage an appeals process
Continue treatment during the appeals
Ask the insurer what evidence-based
outcome measures it uses to assess patient
health and eligibility for benefits.
Appeals can take weeks or months to complete, and health professionals and facilities that treat eating Some insurance companies may use body mass index disorders advise that it's very important for the (BMI) as a criterion for inpatient admission or patient's well-being to stay in treatment if at all discharge from treatment for bulimia nervosa, for possible to maintain progress in recovery. example, which may not be a valid outcome measure. This is because patients with bulimia nervosa can have Clarify with the insurer the reasons for the
close-to-ideal BMIs, when in fact, they may be very denial of coverage.
sick. Thus, BMI does not correlate well with good health in a patient with bulimia nervosa. For example, Most insurers send the denial in writing. Claims if a patient with bulimia nervosa was previously advocates at treatment centers advise patients and overweight or obese and lost significant weight in a families to make sure they understand the reasons for short timeframe, the patient's weight might approach the denial and ask the insurance company for the the norm for BMI. Yet, a sudden and large weight loss reason in writing if a written response has not been in such a person could adversely affect his or her blood chemistry and indicate a need for intensive treatment or even hospitalization. Send copies of the letter of denial to all
concerned parties with documentation of the
Ask that medical benefits, rather than mental
health benefits, be used to cover
hospitalization costs for bulimia nervosa-
Claims advocates at treatment centers state that related medical problems.
sending documentation of an appeals request to the medical director, the human resources director of the Claims advocates advise that sometimes claims for company where the patient works (or has insurance physical problems such as those arising from excessive under), if applicable can help bring attention to the fasting or purging, for example, are filed under the situation. Presenting a professional-looking and wrong arm of the insurance benefit plan—they are organized appeal with appropriate documentation, filed under mental health instead of medical benefits. including an evidence-based care plan makes the They say it's worth checking with the insurance strongest case possible. Initial denials are often company to ensure this hasn't happened. That way, overturned at higher appeal levels, because higher- mental health benefits can be reserved for the level appeals are often reviewed by a doctor who may patient's nonmedical treatment needs like have a better understanding than the initial claims psychotherapy. Various diagnostic laboratory tests can reviewer of the clinical information provided, identify the medical conditions that need to be treated especially well-organized, evidence-based in a patient with eating disorders. Also, if a patient has a diagnosis of two mental disorders (also called a dual diagnosis), and if that diagnosis is considered by the insurance company to be more "severe" than an eating disorder, the patient may be eligible for more days of treatment.
NEDA TOOLKIT for Parents
Ask the insurer whether they will "flex the
Negotiate with the treatment center about
the cost of treatment.
Flexing benefits means that the insurer applies one Our survey of treatment centers indicates that some type of benefit for a different use. For example, treatment centers have a sliding fee scale and may medical benefits might be "flexed" to cover some adjust the treatment charges or set up a payment aspect of mental health treatment— usually plan for the patient's out-of pocket costs. inpatient treatment. Also, inpatient benefits might be flexed (traded) to substitute intensive outpatient Discuss with the insurer how existing laws
care for inpatient care—for example, 30 inpatient and clinical practice standards affect your
days for 60 intensive outpatient benefit days. Substance abuse (also called chemical dependency) situation.
benefits might be traded for additional benefits to treat the eating disorder if the beneficiary thinks Educate yourself about how the state's mental he/she will never need the substance abuse benefits health parity laws and mandates apply to the available under his/ her coverage. There is a clinical patient's insurance coverage. Also ask the insurer if it rationale for doing this: if the eating disorder is not is aware of evidence reports on treatment for eating treated appropriately from the outset, the insurer disorders and guidelines like the American risks incurring additional and higher costs for patient Psychiatric Association's clinical guidelines for care in the future because further hospitalization treating eating disorders: www.psych.org. Ask what and treatment may be needed. By flexing inpatient role the evidence plays in the decision about medical benefits or trading inpatient days for benefits. As a last resort, some patients or their outpatient days to obtain more days of mental advocates may also contact the state insurance health treatment, future and possibly higher commissioner, state consumer's rights commission, healthcare expenses might be avoided. While an attorney, the media, or legislators to bring insurers are not obligated to do flex benefits, they attention to the issue of access to care for patients may respond to a sound, logical argument to do so if with eating disorders. it makes good sense from both a business and patient care perspective in the longer term. If you can support this argument with your doctors' recommended treatment plan and clinical evidence from practice guidelines and an evidence report, the insurer may agree. If the patient is employed or in a union, consider asking the employer (or its human resources manager) or union representative to negotiate with the insurer about aspects of the coverage policy that seem open to interpretation. As a client of the insurance company, the employer is likely paying a lot of money to provide benefits to employees (even when employees pay part of the insurance premiums). Because insurance companies want to maintain good business relationships with their clients, the employer may have more influence than the patient alone when negotiating for reimbursement. Many patients or families of patients are afraid or embarrassed to discuss bulimia or anorexia with an employer. Remember that legally, a person cannot be fired and insurance cannot be dropped solely because of having an eating disorder (or any other health condition).
NEDA TOOLKIT for Parents
NEDA TOOLKIT for Parents
This eating disorders glossary defines terms you may encounter when seeking information and talking with care
providers about diagnosis and treatment of all types of eating disorders. It also contains some slang terms that may be used by individuals with an eating disorder.
Alternative Therapy In the context of treatment for
Art Therapy A form of expressive therapy that uses
eating disorders, a treatment that does not use drugs visual art to encourage the patient's growth of self- or bring unconscious mental material into full awareness and self-esteem to make attitudinal and consciousness. For example yoga, guided imagery, behavioral changes. expressive therapy, and massage therapy are considered alternative therapies. Atypical Antipsychotics A new group of medications
used to treat psychiatric conditions. These drugs may Amenorrhea The absence of at least three
have fewer side effects than older classes of drugs consecutive menstrual cycles. used to treat the same psychiatric conditions. Ana Slang for anorexia or anorexic.
B&P An abbreviation used for binge eating and
purging in the context of bulimic behavior. ANAD (National Association of Anorexia Nervosa and
Associated Disorders) A nonprofit corporation that
Behavior Therapy (BT) A type of psychotherapy that
seeks to alleviate the problems of eating disorders, uses principles of learning to increase the frequency especially anorexia nervosa and bulimia nervosa. of desired behaviors and/or decrease the frequency of problem behaviors. When used to treat an eating Anorexia Nervosa A disorder in which an individual
disorder, the focus is on modifying the behavioral refuses to maintain minimally normal body weight, abnormalities of the disorder by teaching relaxation intensely fears gaining weight, and exhibits a techniques and coping strategies that affected significant disturbance in his/her perception of the individuals can use instead of not eating, or binge shape or size of his/her body. eating and purging. Subtypes of BT include dialectical behavior therapy (DBT), exposure and Anorexia Athletica The use of excessive exercise to
response prevention (ERP), and hypnobehavioral Anticonvulsants Drugs used to prevent or treat
Binge Eating Disorder (also Bingeing) Consuming an
amount of food that is considered much larger than the amount that most individuals would eat under Antiemetics Drugs used to prevent or treat nausea
similar circumstances within a discrete period of time. Also referred to as "binge eating." Anxiety A persistent feeling of dread, apprehension,
Beneficiary The recipient of benefits from an
and impending disaster. There are several types of insurance policy anxiety disorders, including: panic disorder, agoraphobia, obsessive-compulsive disorder, social Biofeedback A technique that measures bodily
and specific phobias, and posttraumatic stress functions, like breathing, heart rate, blood pressure, disorder. Anxiety is a type of mood disorder. (See skin temperature, and muscle tension. Biofeedback is Mood Disorders.) used to teach people how to alter bodily functions through relaxation or imagery. Typically, a Arrhythmia An alteration in the normal rhythm of the
practitioner describes stressful situations and guides a person through using relaxation techniques. The person can see how their heart rate and blood pressure change in response to being stressed or relaxed. This is a type of non-drug, non-
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Body Dysmorphic Disorder or Dysmorphophobia A
COBRA A federal act in 1985 that included provisions
mental condition defined in the DSM-IV in which the to protect health insurance benefits coverage for patient is preoccupied with a real or workers and their families who lose their jobs. The perceived defect in his/her appearance. (See DSM- landmark Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) health benefit provisions became law in 1986. The law amends the Body Image The subjective opinion about one's
Employee Retirement Income Security Act (ERISA), physical appearance based on self-perception of the Internal Revenue Code, and the Public Health body size and shape and the reactions of others. Service Act to provide continuation of employer- sponsored group health coverage that otherwise Body Mass Index (BMI) A formula used to calculate
might be terminated. The U.S. Centers for Medicare & the ratio of a person's weight to height. BMI is Medicaid Services has advisory jurisdiction for the expressed as a number that is used to determine COBRA law as it applies to state and local whether an individual's weight is within normal government (public sector) employers and their ranges for age and sex on a standardized BMI chart. group health plans. The U.S. Centers for Disease Control and Prevention Web site offers BMI calculators and standardized Cognitive Therapy (CT) A type of psychotherapeutic
treatment that attempts to change a patient's feelings and behaviors by changing the way the Bulimia Nervosa A disorder defined in the DSM-IV-R
patient thinks about or perceives his/her significant in which a patient binges on food an average of life experiences. Subtypes include cognitive analytic twice weekly in a three-month time period, followed therapy and cognitive orientation therapy. by compensatory behavior aimed at preventing weight gain. This behavior may include excessive Cognitive Analytic Therapy (CAT) A type of cognitive
exercise, vomiting, or the misuse of laxatives, therapy that focuses its attention on discovering how diuretics, other medications, and enemas. a patient's problems have evolved and how the procedures the patient has devised to cope with Bulimarexia A term used to describe individuals who
them may be ineffective or even harmful. CAT is engage alternately in bulimic behavior and anorexic designed to enable people to gain an understanding of how the difficulties they experience may be made worse by their habitual coping mechanisms. Case Management An approach to patient care in
Problems are understood in the light of a person's which a case manager mobilizes people to organize personal history and life experiences. The focus is on appropriate services and supports for a patient's recognizing how these coping procedures originated treatment. A case manager coordinates mental and how they can be adapted. health, social work, educational, health, vocational, transportation, advocacy, respite care, and Cognitive Behavior Therapy (CBT) A treatment that
recreational services, as needed. The case manager involves three overlapping phases when used to ensures that the changing needs of the patient and treat an eating disorder. For example, with bulimia, family members supporting that patient and family the first phase focuses on helping people to resist members supporting that patient are met. the urge to binge eat and purge by educating them about the dangers of their behavior. The second phase introduces procedures to reduce dietary restraint and increase the regularity of eating. The last phase involves teaching people relapse- prevention strategies to help them prepare for possible setbacks. A course of individual CBT for bulimia nervosa usually involves 16- to 20-hour-long sessions over a period of 4 to 5 months. It is offered on an individual, group, or self-managed basis. The goals of CBT are designed to interrupt the proposed bulimic cycle that is perpetuated by low self-esteem, extreme concerns about shape and weight, and extreme means of weight control.
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Cognitive Orientation Therapy (COT) A type of
Disordered Eating Term used to describe any
cognitive therapy that uses a systematic procedure atypical eating behavior. to understand the meaning of a patient's behavior by exploring certain themes such as aggression and Drunkorexia Behaviors that include any or all of the
avoidance. The procedure for modifying behavior following: replacing food consumption with then focuses on systematically changing the excessive alcohol consumption; consuming food patient's beliefs related to the themes and not along with sufficient amounts of alcohol to induce directly to eating behavior vomiting as a method of purging and numbing Comorbid Conditions Multiple physical and/or
mental conditions existing in a person at the same DSM-IV The fourth (and most current as of 2006)
time. (See Dual Diagnosis.) edition of the Diagnostic and Statistical Manual for Mental Disorders IV published by the American Crisis Residential Treatment Services Short-term,
Psychiatric Association (APA). This manual lists round-the-clock help provided in a nonhospital mental diseases, conditions, and disorders, and also setting during a crisis. The purposes of this care are lists the criteria established by APA to diagnose to avoid inpatient hospitalization, help stabilize the them. Several different eating disorders are listed in individual in crisis, and determine the next the manual, including bulimia nervosa. appropriate step. DSM-IV Diagnostic Criteria A list of symptoms in the
Cure The treated condition or disorder is
Diagnostic and Statistical Manual for Mental permanently gone, never to return in the individual Disorders IV published by APA. The criteria describe who received treatment. Not to be confused with the features of the mental diseases and disorders "remission." (See Remission.) listed in the manual. For a particular mental disorder to be diagnosed in an individual, the individual must Dental Caries Tooth cavities. The teeth of people
exhibit the symptoms listed in the criteria for that with bulimia who using vomiting as a purging disorder. Many health plans require that a DSM-IV method may be especially vulnerable to developing diagnosis be made by a qualified clinician before cavities because of the exposure of teeth to the high approving benefits for a patient seeking treatment acid content of vomit. for a mental disorder such as anorexia or bulimia. Depression (also called Major Depressive Disorder) A
DSM-IV-R Diagnostic Criteria Criteria in the revised
condition that is characterized by one or more major edition of the DSM-IV used to diagnose mental depressive episodes consisting of two or more weeks during which a person experiences a depressed mood or loss of interest or pleasure in nearly all Dual Diagnosis Two mental health disorders in a
activities. It is one of the mood disorders listed in the patient at the same time, as diagnosed by a clinician. DSM-IV-R. (See Mood Disorders.) For example, a patient may be given a diagnosis of both bulimia nervosa and obsessive-compulsive Diabetic Omission of Insulin A nonpurging method of
disorder or anorexia and major depressive disorder. compensating for excess calorie intake that may be used by a person with diabetes and bulimia. Eating Disorders Anonymous (EDA) A fellowship of
individuals who share their experiences with each Dialectical Behavior Therapy (DBT) A type of
other to try to solve common problems and help behavioral therapy that views emotional each other recover from their eating disorders. deregulation as the core problem in bulimia nervosa. It involves teaching people with bulimia nervosa Eating Disorders Not Otherwise Specified (ED-NOS)
new skills to regulate negative emotions and replace Any disorder of eating that does not meet the criteria dysfunctional behavior. A typical course of treatment for anorexia nervosa or bulimic nervosa. is 20 group sessions lasting 2 hours once a week. (See Behavioral Therapy.) Eating Disorder Inventory (EDI) A self-report test that
clinicians use with patients to diagnose specific eating disorders and determine the severity of a patient's condition.
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Eating Disorder Inventory-2 (EDI-2) Second edition of
Expressive Therapy A nondrug, nonpsychotherapy
form of treatment that uses the performing and/or visual arts to help people express their thoughts and Ed Slang Eating disorder.
emotions. Whether through dance, movement, art, drama, drawing, painting, etc., expressive therapy ED Acronym for eating disorder.
provides an opportunity for communication that might otherwise remain repressed. Electrolyte Imbalance A physical condition that
occurs when ionized salt concentrations (commonly Eye Movement Desensitization and Reprocessing
sodium and potassium) are at abnormal levels in the (EMDR) A nondrug and nonpsychotherapy form of
body. This condition can occur as a side effect of treatment in which a therapist waves his/her fingers some bulimic compensatory behaviors, such as back and forth in front of the patient's eyes, and the patient tracks the movements while also focusing on a traumatic event. It is thought that the act of Emetic A class of drugs that induces vomiting.
tracking while concentrating allows a different level Emetics may be used as part of a bulimic of processing to occur in the brain so that the patient compensatory behavior to induce vomiting after a can review the event more calmly or more binge eating episode. completely than before. Enema The injection of fluid into the rectum for the
Family Therapy A form of psychotherapy that
purpose of cleansing the bowel. Enemas may be involves members of a nuclear or extended family. used as a bulimic compensatory behavior to purge Some forms of family therapy are based on after a binge eating episode. behavioral or psychodynamic principles; the most common form is based on family systems theory. Equine/Animal-assisted Therapy A treatment
This approach regards the family as the unit of program in which people interact with horses and treatment and emphasizes factors such as become aware of their own emotional states relationships and communication patterns. With through the reactions of the horse to their behavior. eating disorders, the focus is on the eating disorder and how the disorder affects family relationships. Exercise Therapy An individualized exercise plan
Family therapy tends to be short-term, usually that is written by a doctor or rehabilitation specialist, lasting only a few months, although it can last longer such as a clinical exercise physiologist, physical depending on the family circumstances. therapist, or nurse. The plan takes into account an individual's current medical condition and provides Guided Imagery A technique in which the patient is
advice for what type of exercise to perform, how directed by a person (either in person or by using a hard to exercise, how long, and how many times per tape recording) to relax and imagine certain images and scenes to promote relaxation, promote changes in attitude or behavior, and encourage physical Exposure and Response Prevention (ERP) A type of
healing. Guided imagery is sometimes called behavior therapy strategy that is based on the theory visualization. Sometimes music is used as that purging serves to decrease the anxiety background noise during the imagery session. (See associated with eating. Purging is therefore Alternative Therapy.) negatively reinforced via anxiety reduction. The goal of ERP is to modify the association between anxiety and purging by preventing purging following eating until the anxiety associated with eating subsides. (See Behavioral Therapy.)
NEDA TOOLKIT for Parents
Health Insurance Portability and Accountability Act
Hypoglycemia An abnormally low concentration of
(HIPAA) A federal law enacted in 1996 with a number
glucose in the blood. of provisions intended to ensure certain consumer health insurance protections for working Americans In-network benefits Health insurance benefits that a
and their families and standards for electronic beneficiary is entitled to receive from a designated health information and protect privacy of group (network) of healthcare providers. The individuals' health information. HIPAA applies to "network" is established by the health insurer that three types of health insurance coverage: group contracts with certain providers to provide care for health plans, individual health insurance, and beneficiaries within that network. comparable coverage through a high-risk pool. HIPAA may lower a person's chance of losing Indemnity Insurance A health insurance plan that
existing coverage, ease the ability to switch health reimburses the member or healthcare provider on a plans, and/or help a person buy coverage on his/her fee-for-service basis, usually at a rate lower than the own if a person loses employer coverage and has no actual charges for services rendered, and often after other coverage available. a deductible has been satisfied by the insured. Health Insurance Reform for Consumers Federal law
Independent Living Services Services for a person
has provided to consumers some valuable–though with a medical or mental health-related problem limited–protections when obtaining, changing, or who is living on his/ her own. Services include continuing health insurance. Understanding these therapeutic group homes, supervised apartment protections, as well as laws in the state in which one living, monitoring the person's compliance with resides, can help with making more informed prescribed mental and medical treatment plans, and choices when work situations change or when changing health coverage or accessing care. Three important federal laws that can affect coverage and Intake Screening An interview conducted by health
access to care for people with eating disorders are service providers when a patient is admitted to a listed below. More information is available at: hospital or treatment program. International Classification of Diseases (ICD-10) The
World Health Organization lists international Consolidated Omnibus Budget Reconciliation standards used to diagnose and classify diseases. Act of 1985 (COBRA) The listing is used by the healthcare system so Health Insurance Portability and Accountability clinicians can assign an ICD code to submit claims to Act of 1996 (HIPAA); insurers for reimbursement for services for treating Mental Health Parity Act of 1996 (MHPA). various medical and mental health conditions in patients. The code is periodically updated to reflect Health Maintenance Organization (HMO) A health
changes in classifications of disease or to add new plan that employs or contracts with primary care physicians to write referrals for all care that covered patients obtain from specialists in a network of Interpersonal Therapy (IPT) IPT (also called
healthcare providers with whom the HMO contracts. interpersonal psychotherapy) is designed to help The patient's choice of treatment providers is usually people identify and address their interpersonal problems, specifically those involving grief, interpersonal role conflicts, role transitions, and Hematemesis The vomiting of blood.
interpersonal deficits. In this therapy, no emphasis is placed directly on modifying eating habits. Instead, Hypno-behavioral Therapy A type of behavioral
the expectation is that the therapy will enable therapy that uses a combination of behavioral people to change as their interpersonal functioning techniques such as self-monitoring to change improves. IPT usually involves 16 to 20 hour-long, maladaptive eating disorders and hypnotic one-on-one treatment sessions over a period of 4 to techniques intended to reinforce and encourage behavior change.
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Ketosis A condition characterized by an abnormally
Maudsley Method A family-centered treatment
elevated concentration of ketones in the body program with three distinct phases. The first phase tissues and fluids, which can be caused by starvation. for a patient who is severely underweight is to regain It is a complication of diabetes, starvation, and control of eating habits and break the cycle of starvation or binge eating and purging. The second phase begins once the patient's eating is under Level of Care The care setting and intensity of care
control with a goal of returning independent eating that a patient is receiving (e.g., inpatient hospital, to the patient. The goal of the third and final phase is outpatient hospital, outpatient residential, intensive is to address the broader concerns of the outpatient, residential). Health plans and insurance patient's development. companies correlate their payment structures to the level of care being provided and also map a patient's Mealtime Support Therapy Treatment program
eligibility for a particular level of care to the developed to help patients with eating disorders eat patient's medical/ psychological status. healthfully and with less emotional upset. Major Depression See Major Depressive Disorder.
Mental Health Parity Laws Federal and State laws
that require health insurers to provide the same Major Depressive Disorder A condition that is
level of healthcare benefits for mental disorders and characterized by one or more major depressive conditions as they do for medical disorders and episodes that consist of periods of two or more conditions. For example, the federal Mental Health weeks during which a patient has either a depressed Parity Act of 1996 (MHPA) may prevent a group mood of loss of interest or pleasure in nearly all health plan from placing annual or lifetime dollar activities. (See Depression) limits on mental health benefits that are lower, or less favorable, than annual or lifetime dollar limits Mallory-Weiss Tear One or more slit-like tears in the
for medical and surgical benefits offered under the mucosa at the lower end of the esophagus as a result of severe vomiting. Mia Slang. For bulimia or bulimic.
Mandometer Therapy Treatment program for eating
disorders based on the idea that psychiatric Modified Cyclic Antidepressants A class of
symptoms of people with eating disorders emerge as medications used to treat depression. a result of poor nutrition and are not a cause of the eating disorder. A Mandometer is a computer that Monoamine Oxidase Inhibitors A class of
measures food intake and is used to determine a medications used to treat depression. course of therapy. Mood Disorders Mental disorders characterized by
Mandates See State Mandates.
periods of depression, sometimes alternating with periods of elevated mood. People with mood Massage Therapy A generic term for any of a number
disorders suffer from severe or prolonged mood of various types of therapeutic touch in which the states that disrupt daily functioning. Among the practitioner massages, applies pressure to, or general mood disorders classified in the Diagnostic manipulates muscles, certain points on the body, or and Statistical Manual of Mental Disorders (DSM-IV) other soft tissues to improve health and well-being. are major depressive disorder, bipolar disorder, and Massage therapy is thought to relieve anxiety and dysthymia. (See Anxiety and Major Depressive depression in patients with an eating disorder. Movement/Dance Therapy The psychotherapeutic
use of movement as a process that furthers the emotional, cognitive, social, and physical integration of the individual, according to the American Dance Therapy Association.
NEDA TOOLKIT for Parents
Motivational Enhancement Therapy (MET) A
Osteoporosis A condition characterized by a
treatment is based on a model of change, with focus decrease in bone mass with decreased density and on the stages of change. Stages of change represent enlargement of bone spaces, thus producing porosity constellations of intentions and behaviors through and brittleness. This can sometimes be a which individuals pass as they move from having a complication of an eating disorder, including bulimia problem to doing something to resolve it. The stages nervosa and anorexia nervosa. of change move from "pre-contemplation," in which individuals show no intention of changing, to the Out-of-network benefits Healthcare obtained by a
"action" stage, in which they are actively engaged in beneficiary from providers (hospitals, clinicians, etc.) overcoming their problem. Transition from one stage that are outside the network that the insurance to the next is sequential, but not linear. The aim of company has assigned to that beneficiary. Benefits MET is to help individuals move from earlier stages obtained outside the designated network are usually into the action stage using cognitive and emotional reimbursed at a lower rate. In other words, beneficiaries share more of the cost of care when obtaining that care "out of network" unless the Nonpurging Any of a number of behaviors engaged
insurance company has given the beneficiary special in by a person with bulimia nervosa to offset written authorization to go out of network. potential weight gain from excessive calorie intake from binge eating. Nonpurging can take the form of Parity Equality (see Mental Health Parity Laws).
excessive exercise, misuse of insulin by people with diabetes, or long periods of fasting. Partial Hospitalization (Intensive Outpatient) For a
patient with an eating disorder, partial Nutritional Therapy Therapy that provides patients
hospitalization is a time-limited, structured program with information on the effects of their eating of psychotherapy and other therapeutic services disorder. For example, therapy often includes, as provided through an outpatient hospital or appropriate, techniques to avoid binge eating and community mental health center. The goal is to refeed, and advice about making meals and eating. resolve or stabilize an acute episode of The goals of nutrition therapy for individuals with mental/behavioral illness. anorexia and bulimia nervosa differ according to the disorder. With bulimia, for example, goals are to Peptic Esophagitis Inflammation of the esophagus
stabilize blood sugar levels, help individuals caused by reflux of stomach contents and acid. maintain a diet that provides them with enough nutrients, and help restore gastrointestinal health. Pharmacotherapy Treatment of a disease or
condition using clinician-prescribed drugs. Obsessive-compulsive Disorder (OCD) Mental
disorder in which recurrent thoughts, impulses, or Phenethylamine Monoamine Reuptake Inhibitors A
images cause inappropriate anxiety and distress, class of drugs used to treat depression. followed by acts that the sufferer feels compelled to perform to alleviate this anxiety. Criteria for mood Pre-existing Condition A health problem that existed
disorder diagnoses can be found in the DSMIV. or was treated before the effective date of one's health insurance policy. Opioid Antagonists A type of drug therapy that
interferes with the brain's opioid receptors and is Provider A healthcare facility (e.g., hospital,
sometimes used to treat eating disorders. residential treatment center), doctor, nurse, therapist, social worker, or other professional who Orthorexia Nervosa An eating disorder in which a
provides care to a patient. person obsesses about eating only "pure" and healthy food to such an extent that it interferes with Psychoanalysis An intensive, nondirective form of
the person's life. This disorder is not a diagnosis psychodynamic therapy in which the focus of listed in the DSM-IV. treatment is exploration of a person's mind and habitual thought patterns. It is insight oriented, meaning that the goal of treatment is for the patient to increase understanding of the sources of his/her inner conflicts and emotional problems.
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Psychodrama A method of psychotherapy in which
Recovery Retreat See Residential Treatment Center.
patients enact the relevant events in their lives instead of simply talking about them. Relaxation Training A technique involving tightly
contracting and releasing muscles with the intent to Psychodynamic Therapy Psychodynamic theory
release or reduce stress. views the human personality as developing from interactions between conscious and unconscious Remission A period in which the symptoms of a
mental processes. The purpose of all forms of disease are absent. Remission differs from the psychodynamic treatment is to bring unconscious concept of "cure" in that the disease can return. The mental material and processes into full term "cure" signifies that the treated condition or consciousness so that the patient can gain more disorder is permanently gone, never to return in the control over his/her life. individual who received treatment. Psychodynamic Group Therapy Psychodynamic
Residential Services Services delivered in a
groups are based on the same principles as structured residence other than the hospital or a individual psychodynamic therapy and aim to help people with past difficulties, relationships, and trauma, as well as current problems. The groups are Residential Treatment Center A 24-hour residential
typically composed of eight members plus one or environment outside the home that includes 24-hour provision or access to support personnel capable of meeting the client's needs. Psychoeducational Therapy A treatment intended to
teach people about their problem, how to treat it, Selective Serotonin Reuptake Inhibitors (SSRI) A class
and how to recognize signs of relapse so that they of antidepressants used to treat depression, anxiety can get necessary treatment before their difficulty disorders, and some personality disorders. These worsens or recurs. Family psychoeducation includes drugs are designed to elevate the level of the teaching coping strategies and problem-solving neurotransmitter serotonin. A low level of serotonin skills to families, friends, and/or caregivers to help is currently seen as one of several neurochemical them deal more effectively with the individual. symptoms of depression. Low levels of serotonin in turn can be caused by an anxiety disorder, because Psychopathological Rating Scale Self-Rating Scale
serotonin is needed to metabolize stress hormones. for Affective Syndromes (CPRS-SA) A test used to
estimate the severity of depression, anxiety, and Self-directedness A personality trait that comprises
obsession in an individual. self-confidence, reliability, responsibility, resourcefulness, and goal orientation. Psychopharmacotherapy Use of drugs for treatment
of a mental or emotional disorder. Self-guided Cognitive Behavior Therapy A modified
form of cognitive behavior therapy in which a Psychotherapy The treatment of mental and
treatment manual is provided for people to proceed emotional disorders through the use of psychologic with treatment on their own, or with support from a techniques (some of which are described below) nonprofessional. Guided self-help usually implies designed to encourage communication of conflicts that the support person may or may not have some and insight into problems, with the goal being relief professional training, but is usually not a specialist in of symptoms, changes in behavior leading to eating disorders. The important characteristics of the improved social and vocational functioning, and self-help approach are the use of a highly structured personality growth. and detailed manual-based CBT, with guidance as to the appropriateness of self-help, and advice on Purging To evacuate the contents of the stomach or
where to seek additional help. bowels by any of several means. In bulimia, purging is used to compensate for excessive food intake. Methods of purging include vomiting, enemas, and excessive exercise.
NEDA TOOLKIT for Parents
Self Psychology A type of psychoanalysis that views
Telephone Therapy A type of psychotherapy
anorexia and bulimia as specific cases of pathology provided over the telephone by a trained of the self. According to this viewpoint, for example, people with bulimia nervosa cannot rely on human beings to fulfill their self-object needs (e.g., Tetracyclics A class of drugs used to treat depression.
regulation of self-esteem, calming, soothing, vitalizing). Instead, they rely on food (its Therapeutic Foster Care A foster care program in
consumption or avoidance) to fulfill these needs. Self which youths who cannot live at home are placed in psychological therapy involves helping people with homes with foster parents who have been trained to bulimia give up their pathological preference for provide a structured environment that supports the food as a self-object and begin to rely on human child's learning, social, and emotional skills. beings as selfobjects, beginning with their therapist. Thinspiration Slang Photographs, poems, or any
Self-report Measures An itemized written test in
other stimulus that influences a person to strive to which a person rates his/her feeling towards each question; the test is designed to categorize the personality or behavior of the person. Third-party Payer An organization that provides
health insurance benefits and reimburses for care for State Mandate A proclamation, order, or law from a
state legislature that issues specific instructions or regulations. Many states have issued mandates Thyroid Medication Abuse Excessive use or misuse of
pertaining to coverage of mental health benefits and drugs used to treat thyroid conditions; a side effect specific disorders the state requires insurers to cover. of these drugs is weight loss. Substance Abuse Use of a mood or behavior-altering
Treatment Plan A multidisciplinary care plan for
substance in a maladaptive pattern resulting in each beneficiary in active case management. It significant impairment or distress of the user. includes specific services to be delivered, the frequency of services, expected duration, community Substance Use Disorders The fourth edition of the
resources, all funding options, treatment goals, and Diagnostic and Statistical Manual of Mental assessment of the beneficiary environment. The plan Disorders (DSM-IV) defines a substance use disorder is updated monthly and modified when appropriate. as a maladaptive pattern of substance use leading to clinically significant impairment or distress, as Tricyclic Antidepressants A class of drugs used to
manifested by one (or more) of the following, treat depression. occurring within a 12-month period: (1) Recurrent substance use resulting in a failure to fulfill major Trigger A stimulus that causes an involuntary reflex
role obligations at work, school, or home; behavior. A trigger may cause a recovering person (2) Recurrent substance use in situations in which it with bulimia to engage in bulimic behavior again. is physically hazardous; and (3) Recurrent substance- related legal, social, and/ or interpersonal problems. Usual and Customary Fee An insurance term that
indicates the amount the insurance company will Subthreshold Eating Disorder Condition in which a
reimburse for a particular service or procedure. This person exhibits disordered eating but not to the amount is often less than the amount charged by the extent that it fulfills all the criteria for diagnosis of service provider. an eating disorder. Vocational Services Programs that teach skills
Supportive Residential Services See Residential
needed for self-sufficiency. Treatment Center. Yoga A system of physical postures, breathing
Supportive Therapy Psychotherapy that focuses on
techniques, and meditation practices to promote the management and resolution of current bodily or mental control and well-being. difficulties and life decisions using the patient's strengths and available resources.
NEDA TOOLKIT for Parents
Common Myths about eating disorders
Ways to start a discussion with a loved one
who might have an eating disorder
ECRI Institute Feasibility Study on Eating Disorders Awareness and Education Needs. March 2004; 24 p. Navigating the System: Consumer Tips for Getting Treatment for Eating Disorders, Margo Maine, PhD for An Eating Disorders Resource for Schools, The Victorian Centre of Excellence in Eating Disorders and the Eating Disorders Foundation of Victoria (2004); pgs Identifying and treating eating disorders. American Academy of Pediatrics. Practice Guideline Pediatrics 2003 Jan; 111 (1): 204-11 Eating Disorders: A Time for Change Practice guideline for the treatment of patients with Russell, Michael. 2006 Myths About Eating Disorders. eating disorders. American Psychiatric Association. EzineArticles (December 02), Why parent-school communications may be
U.S. Department of Health and Human Services; Office on Women's Health; Eating Disorders difficult: Regulatory constraints and
American School Counselor Association American Psychiatric Association Diagnostic and Statistical Manual for Mental disorders-IV ECRI Institute interviews with educators and parents of children with eating disorders Eating disorder signs, symptoms, and
Levine, M. (1994). "A Short List of Salient Warning Signs Treatment settings and levels of care
for Eating Disorders." Presented at the 13th National ECRI Institute Bulimia Resource Guide
American Psychiatric Association (1994). Diagnostic and Statistical Manual for Mental Disorders, 4th ed. APA: Washington D.C. Questions to ask the care team at a facility
Zerbe, K.J. (1995). The Body Betrayed. Carlsbad, CA: Gurze Books. ECRI Institute Bulimia Resource Guide
U.S. Office on Women's Health: Eating Disorders Gidwani, G.P. and Rome, E.S. (1997). Eating Disorders. Clinical Obstetrics and Gynecology, 40(3), 601-615. Questions parents may want to ask treatment
ECRI Institute Bulimia Resource Guide ECRI Institute Bulimia Resource Guide
ECRI Institute interviews with parents
NEDA TOOLKIT for Parents
How to take care of yourself while caring for
a loved one with an eating disorder
Canadian National Eating Disorder Information Centre University of Florida, Institute of Food and Agricultural Anorexia nervosa and related eating disorders, Inc. Confidentiality Issues
ECRI Institute Bulimia Resource Guide
COBRA rights checklist
U.S. Department of Labor www.dol.gov ECRI Institute Bulimia Resource Guide
Sample letters to use with insurance
National Eating Disorders Association member How to manage an appeals process
ECRI Institute Bulimia Resource Guide
Vehicular Based Drug Box Temperature Control Study A Research Project Presented to the Department of Occupational and Technical Studies Old Dominion University In Partial Fulfillment of the Requirement for the Degree of Master of Science in Occupational and Technical Education