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This feasibility study showed whilst aquatic therapy for Duchenne muscular dystrophy is valued, its delivery in tertiary centres poses problems and further intervention development is needed before a full RCT.

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Daniel Hind 1,*, James Parkin 1, Victoria Whitworth 1, Saleema Rex 1, Tracey Young 2, Lisa Hampson 3, Jennie Sheehan 4, Chin Maguire 1, Hannah Cantrill 1, Elaine Scott 2, Heather Epps 5, Marion Main 6, Michelle Geary 7, Heather McMurchie 8, Lindsey Pallant 9, Daniel Woods 10, Jennifer Freeman 11, Ellen Lee 1, Michelle Eagle 12, Tracey Willis 13, Francesco Muntoni 6, Peter Baxter 14

1 Sheffield Clinical Trials Research Unit, University of Sheffield, Sheffield, UK
2 School of Health and Related Research, University of Sheffield, Sheffield, UK
3 Department of Mathematics and Statistics, University of Lancaster, Lancaster, UK
4 Evelina London Children’s Hospital, Guy’s & St Thomas’ NHS Foundation Trust, London, UK
5 Aquaepps, Dorking, UK
6 Dubowitz Neuromuscular Centre (DNC), Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
7 Children’s Therapy Department, University Hospital Southampton NHS Foundation Trust, Southampton, UK
8 Paediatric Physiotherapy, Heart of England NHS Foundation Trust, Birmingham, UK
9 Regional Paediatric Neuromuscular Team, Leeds Teaching Hospitals NHS Trust, Leeds, UK
10 PT Kids, Doncaster, UK
11 Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
12 Newcastle upon Tyne Hospitals NHS Trust, Newcastle, UK
13 The Oswestry Inherited Neuromuscular Service, The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust, Oswestry, UK
14 Paediatric Neurology, Sheffield Children’s Hospital, Sheffield, UK
* Corresponding author Email: d.hind@sheffield.ac.uk

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Responses to this report

Response by Janet Bloor on 7 September 2017 at 3:06 PM
Ms
Absolute nonsense as a mother of a DMD young man of 23 we fought tooth and nail to get Surrey Clinical Commissioning to pay privately for hydrotherapy at a Care Home in Ewell village at £45 per hour because there were no NHS facilities available I know through Action Duchenne and MDUK how hard it is to fund hydrotherapy a parliamentary report was completed to say so. I would question in the strongest terms how hard to tried to find candidates did you contact any patient organisations? As the Chair of Action Duchenne I know you didn't contact us. Where was this study conducted? Very angry at the lost opportunity. Hope you can put this lack lustre study correct.

 

Response by Dr Peter Baxter on 7 September 2017 at 3:06 PM
Author response

We are grateful to Mrs Bloor for her interest in our study and its findings. MDUK (Muscular Dystrophy UK) was involved from the beginning of the project. They provided advice, help and constructive input at every stage. MDUK also publicised the study in its newsletters. In the report we have not adequately highlighted their contribution. We apologise for this oversight and thank Mrs Bloor for helping us correct it. In relation to Mrs Bloor’s other comments: 1. The NIHR Health Technology Assessment programme, who commissioned the study, only wanted us to include children and young people with Duchenne Muscular Dystrophy who “still had some mobility” (page 5). We also needed to use validated outcome measures. These factors meant that we could only include those able to walk 10 metres without assistance (page 19), which limited us to a smaller group. 2. We assessed 348 possible candidates, i.e the majority of those eligible for the study in the UK (pages viii,xxiii,xxv,36,80,83,85). We found it impossible to recruit as many as we planned for several reasons (pages 33-37,61,72) including - Many were not eligible, as for example they were already taking part in another study so could not join ours; - A number of families did not wish their children to be randomised; - The fragmented provision of hydrotherapy facilities, as mentioned by Mrs Bloor; - Treatment costs 3. 17 neuromuscular centres throughout the UK were approached. In the end only 6 were able to participate, spread throughout England (pages 33-34). The reasons the others could not participate are given in the report. Finally our study was not intended to be a trial of whether hydrotherapy worked or not. The NIHR Health Technology Assessment programme commissioned our study to find if a full scale randomised controlled trial of hydrotherapy was feasible or not. Our results conclusively showed that it was not (page 85). We have offered suggestions for possible alternative approaches (page 91). Peter Baxter and Daniel Hind

 

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