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Survey into Parent and Patient experiences of
Selective Dorsal Rhizotomy
Research Report Prepared for Paula Hansen, BSc (Hons), MBA
On behalf of Support for SDR Wales
[email protected] Telephone: 07897426930 Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy

Contents
Surgery difficulties and results Conclusions and recommendations Thoughtful and Creative Research Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
Background
Support for SDR Wales carried out a survey of parents of patients and patients to provide information from a sample of those who have experienced Selective Dorsal Rhizotomy (SDR). The objective of this survey is to provide supporting information to the WHSSC for the current review being undertaken on the funding of SDR for Welsh patients found suitable for the surgery by neurosurgeons undertaking the surgery in the UK. The main objectives of this survey are as follows:
Provide a demographic of those who have undergone surgery o Where surgery was completed
Provide information on the benefits achieved from the surgery for participants in the
To understand the complications experienced post surgery
To establish the funding arrangements experienced Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
Methodology
The survey was uploaded to survey monkey (https://www.surveymonkey.com/s/J87ZLH9) and posted to the four facebook pages used by those interested in SDR surgery or who have had SDR. These are https://www.facebook.com/groups/349840758374077/ SDR UK https://www.facebook.com/groups/385434281490178/ SDR Scotland https://www.facebook.com/groups/161839724125/ SDR St. Louis Children's Hospital A copy of the survey is available in the appendicies. The sample size across these facebook groups was 3,674 as of 11th January 2013. This includes a mix of those who have had surgery and those looking into the survey. It also includes duplicates of patients where both parents and indeed grandparents are involved in the groups. The sample figure is therefore inflated due to these factors. Using the SDR Wales Group we have analysed that 17% of members relate directly to patients who have had SDR surgery. The remainder are duplicate family members or those fundraising for or investigating surgery currently. On this basis, the overall sample size can be reduced from 3,872 to 624 and the response rate was 12.5% (78) of this There is a 90% confidence rate of an 8.8% error rate based on the response rate and sample size used. On this basis cross tabulation of results is not possible as the sample size would be too small to be statistically accurate. Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
Residency
63%of respondents were residents within the UK at the time of surgery. 11 respondents were located in Wales (14% of all respondents), 2 in Scotland (3%) and the remainder in England. Age at time of the operation
All respondents answered this question. The current guidelines from NICE advise consideration of surgery for children within the age ranges 3 – 9. This accounted for 81% of respondents of the survey. A small but significant number of respondents underwent surgery over the age of 18. These were completed primarily in the USA where boundaries for consideration are between the age of 2 and 40 (St. Louis Children's Hospital/Barnes Jewish Age Criteria). One of the respondents over 18 years of age had the surgery completed in the Walton Centre, Liverpool. Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
Diagnosis
All respondents answered this question. SDR is primarily used as a treatment for children with Cerebral Palsy – Spastic Diplegia and 69.2% of respondents fell within this category. There were however 18% of patients who are categorised as Cerebral Palsy - quadriplegia. 66 of the 77 respondents completed this question. The recommended categories by NICE for the use of SDR as a treatment for Cerebral Palsy is II and III. (NICE (2012) Spasticity in children and young people with non progressive brain disorders) available online at (NICE Guidance). Also note NHS Clinical Commissioning Policy: Selective Dorsal Rhizotomy (SDR) December 2012 document in the appendices, which is also available online and provides updated advice. Of the respondents 71.6% fell within the current guidelines. A significant proportion were in the IV category prior to surgery (17.9%) and a small number in the I and V (7.5% and 3%). Some individuals had not received a formal analysis of their GMFCS and struggled to answer this question, using a checklist available online for assistance (give link). There may be some error as a result." Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
Date of surgery
All respondents answered this question. The data is heavily biased to patients who had the surgery between 2010 and 2012. One of the reasons for this is that the facebook pages concerned were only set up in 2011/2012. A small number of patients underwent SDR prior to 2000 and a more qualitative review of their experiences will be provided later in this report. Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
Location of surgery
All respondents answered this question. The vast majority of respondents had surgery carried out in St Louis Children's Hospital Missouri, USA. However, given around 30 children have received SDR in Frenchay hospital to date, 6 is a good response rate from this sample, accounting for approx. 20% of all patients who have had surgery at Bristol to date. St Louis remains the location of choice, although this is primarily due to the availability of surgery and funding arrangements within the UK. SDR has only been available within the UK for one year (2012) and in limited centres. The number of patients having surgery in 2012 who answered this question was 42 of the 78 (54%). If it is further considered that 18 respondents of this 42 were overseas patients and 7 respondents Welsh where no funding is available, this reduces those respondents who would be eligible to apply for funding in the UK in 2012 to 17. Of this 17, 7 had surgery within the UK (41%) and 10 had surgery in St. Louis, USA (59%). Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
Of the 78 respondents, 73 answered the question related to funding of the surgery. 24 (33%) of respondents were overseas patients who primarily had the surgery paid for under medical insurance policies. 49 UK respondents answered the question on funding arrangements. 5.6% of respondents applied for NHS funding and were approved. Of the respondents applying for funding this is 40%. 8.3% of respondents applied for funding and were refused. This equates to 60% of all respondents applying for funding. 4 of the 6 respondents declined were from Wales. The decline rate as a proportion of total applicants applying for funding excluding Welsh applicants is 25%. The decline rate for Welsh applicants applying for funding is 100%. This sample size is too small to provide accurate information, however Support4SDR have collated information on funding for English patients and found 50% of those who applied received funding. Anecdotal comments on facebook support groups suggest this is increasing as comments show more and more PCTs are providing funding. What is certain is that no Welsh patients have been approved 36 patients indicated they self funded and did not approach the NHS. Of these 2 were USA patients who chose the incorrect response for self funding. Of the 34 UK patients who self funded and did not approach the NHS 24% were Welsh patients where funding is not available and 50% were UK patients prior to surgery being available in the UK. Of the remaining 11 respondents who had surgery during 2012, only 1 provided a comment as to why they didn't approach the NHS. "Did ask about funding but told it wouldn't happen". Anecdotal evidence within the facebook groups indicates similar experiences of other parents when broaching funding with professionals. In addition some parents have decided to go to St. Louis for speed. Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
Of the 77 respondents, 97% had the limited laminectomy version of the surgery. The 3% had the surgery carried out prior to the limited laminectomy surgery being developed. Surgery difficulties and results
Surgery difficulties
The paragraph below provides information on the complications likely as a result of SDR. "SDR Possible Complications
The dorsal rhizotomy is a long and complex neurosurgical procedure. As in other major
neurosurgical procedures, it presents some risks. Paralysis of the legs and bladder,
impotence, and sensory loss are the most serious complications. Wound infection and
meningitis are also possible, but they are usually controlled with antibiotics. Leakage of
the spinal fluid through the wound is another risk.
Abnormal sensitivity of the skin on the feet and legs is relatively common after SDR, but usually resolves within 6 weeks. There is no way to prevent the abnormal sensitivity in the feet. Transient change in bladder control may occur, but this also resolves within a few weeks. A few of our patients have experienced urinary tract infections and pneumonia." St. Louis Childrens.org (2013) "About Selective Dorsal Rhizotomy" (online) (cited 13.01.203) Available from <URL: http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
19 respondents of the 78 answered this question, 9 of whom only responded to advise they encountered no problems. The sample size therefore for difficulties can be reduced to 10 (13%) of the 78 respondents and there were 25 difficulties raised by these respondents. The analysis of this section is conducted as a proportion of all survey participants to understand the risks attached within the overall sample group. The most serious complication experienced was spinal fluid leakage and the same patient experienced wound infection. As a proportion of all survey respondents this accounts for 1%. St Louis Hospital advises of more than 2300 patients only 3 experienced spinal fluid leakage, one of which responded to our survey. Of the St. Louis sample, incidences of spinal fluid leakage were less than 1%. St. Louis Childrens.org (2013) "About Selective Dorsal Rhizotomy" (online) (cited 13.01.203) Available from <URL: One respondent noted ongoing sensory issues, which is also listed as a more serious complication. Of the 78 responses to this survey, 2 advised serious complications as a direct result of surgery (3%). The two other respondents stating operation complications related to complications not specifically related to the surgery itself. One applicant stated problems coming round from the anaesthetic (USA surgery) and the other stated that her son's genitalia was injured on insertion of a catheter plus ongoing bladder problems as a result (UK surgery). The most commonly experienced problem post surgery was sensitivity of the skin within the first 6 weeks of surgery and this was experienced by 12 (15%) of all survey respondents. Two of these (3%) experienced sensitivity of the skin on an ongoing basis. Other complications which could have been specifically as a result of having the SDR surgery were one report of muscle spasms for a few days post surgery and ongoing bladder problems (2), urinary tract infection (1) and pneumonia (2). Acid reflux (1) was also experienced with this being an ongoing problem not experienced pre surgery. It is not clear if this was as a direct result of surgery. One additional difficulty was experienced, which does not relate directly to SDR surgery. One patient reported emotional problems relating to the drug Neurontin and once this was stopped the problems ceased. One of the concerns often raised by professionals in the UK is that SDR can lead to on-going weakness. The question about complications included "on-going increase in weakness" as an option, but this received 0 responses. Whilst these data do not provide evidence of long-term outcome it is important to note that nobody has experienced this problem. Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
Other potential complications that have not been experienced are: Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
An overview of patient comments is provided below. A number of respondents did not tick any of the options for difficulties but completed the text to advise they had experienced no Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
Surgery results
All applicants answered this question and all options received positive responses. The most significant result is the improvement in mobility. 88% of respondents (68) reported some improvement in mobility. Of these, 43% (29) reported the ability to now be able to walk independently without assistance at all times. As a proportion of all respondents this is 37%. A high proportion of respondents (over 80%) found the following benefits post SDR surgery: More independent Improved sitting posture Improved standing posture Improved standing balance Improved confidence Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
67% of respondents reported their child/they were now pain free and a further 15% saw a reduction in pain, meaning 82% of respondents saw an improvement in the pain felt pre- surgery. A basic quality of life without pain is anecdotally one of the primary reasons for parents proceeding with this surgery seen in comments in the facebook pages. 48% reported improvement in educational performance. Removing adults from the responses increases this result to 53%. This is a very high and significant result, which is not easily explained. Some doctors suspect that there may be a neurological reason but reasons given by parents have been the ability of the child to concentrate on studying rather than the effects of spasticity, ability to carry out activities due to improved sitting and standing posture/balance and a new sense of confidence due to achieving more. 44% of respondents reported being able to toilet after surgery whereas prior to surgery toileting was not possible. This improves the quality of life for the child and parent and is one of the unexpected results which parents report on facebook groups that they did not expect. The survey does not distinguish respondents who were already toilet trained prior to surgery and therefore the results are likely to be higher than the indicated 44%. 38% of respondents were advised prior to surgery that orthopaedic surgery would be necessary in the future, but post surgery found this was no longer necessary. This resulted in a financial benefit to the health services concerned for those based in the UK An overview of parents responses is provided below. Of particular interest for long term results are those who had surgery prior to 2000: "NO Spasticity at ALL which means that I no longer have to worry about. premature aging, joint deformity, pain, and any number of other things associated with that aspect." "Dr. Park performed my SDR in 1990. I am now 42 years old. I walked independently before the SDR and I still do. Before the surgery, I fell at least 20 times a day. Now I fall about twice a month. I am sure I would need crutches or a wheelchair now that I am older if I did not have the SDR. So glad that I did it, wish it was available when I was a child." In addition from a personal perspective, as a parent of a child who has had SDR I would like to add my personal perspective: The primary reason for us to proceed with the surgery, over and above mobility issues. was the fact that our sons hips were dislocating and hip surgery was inevitable. In addition to provide him with reduced pain and some improvement to mobility. We were not expecting miracles. As a parent whose child could not toilet train prior to surgery, I firmly believe that he trained within a month of surgery as he was able to sit more comfortably and concentrate on the sensation of needing the toilet rather than the spasticity. This is a personal perspective, but the survey results indicate toilet training as a common result indicated by parents. Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
Respondent comments with patient details: Survey into Parent and Patient experiences of Selective Dorsal Rhizotomy
5. Conclusions and recommendations

The survey findings show that current patient demographics are close to those set out within the criteria for patient selection by NICE. However, positive results have been reported by patients outside this group where they have been selected by a professional in SDR as appropriate for the surgery.  The current NICE guidelines are supported, however the surgery should be available outside this demographic if a professional with experience in the surgery finds it an appropriate solution. This would require referral for assessment to be open to all potential patients.
A high proportion of patients reported benefits post surgery, not all of which were related to mobility. There were also a high proportion of quality of life benefits reported.  Improved mobility should not be the only factor in considering the benefits associated with SDR
A low proportion of difficulties was reported by the sample group. Serious complications were 3% of the sample and most difficulties were short term.  The survey results support SDR as a safe surgery, although it is noted that any surgery including orthopaedic surgery presents high risks.
As the results indicate safety of the surgery and high reported benefits, SDR surgery should be made available to patients in Wales who are selected as appropriate by surgeons undertaking the surgery in the UK. Appendices
Questionnaire 2012/2013 Clinical Commissioning Body: Selective Dorsal Rhizotomy (SDR) December 2012 Commissioning Body: Selective Dorsal Rhizotomy December 2012

Source: http://www.support4sdrwales.org.uk/uploads/2/3/4/5/23451414/survey_into_parent_and_patient_experiences_of_selective_dorsal_rhizotomy.pdf