Best-practice rehabilitation for Facioscapulohumeral dystrophy (FSHD)
Research type
Research Study
Full title
Best practice rehabilitation for people with Facioscapulohumeral dystrophy (FSHD)
IRAS ID
317424
Contact name
Enza Leone
Contact email
Sponsor organisation
Keele University
Duration of Study in the UK
1 years, 5 months, 30 days
Research summary
The aim of this study is to identify what a feasible, acceptable and deliverable as intended “best-practice” conservative non-pharmacological management for people with FSHD should include.
FSHD is the third most common muscular dystrophy. FSHD is non-life limiting and most often presents in the second decade of life. It often begins by affecting arm muscles, before affecting the other muscles more widely. As a result of this, they lose control of their arms, experience difficulty walking or getting around and are at risk of falling. There is no cure for FSHD, but rehabilitation strategies can help to manage many of the symptoms. However, there are no agreed rehabilitation pathways for managing this condition and current rehabilitation practice is varied. It is also difficult for clinicians to design rehabilitation programs as disease progression and symptoms are variable and people with FSHD often get tired and experience pain.
In this research, we will 1) observe UK-based clinical services providing care to people with FSHD and conduct surveys for people with FSHD and UK clinical services to evaluate what is currently being done for FSHD rehabilitation. We will then 2) use this information to hold focus groups for developing agreement on what best practice rehabilitation should consist of and 3) we will test the agreed care in a number of people with FSHD, carers and healthcare professionals (n=15). Then, we will evaluate if this is a feasible, acceptable and deliverable, as intended, package of care.
This study is being funded by the Faculty of Medicine and Health Sciences Doctoral Fellowship Scheme at Keele University.
REC name
South East Scotland REC 01
REC reference
22/SS/0107
Date of REC Opinion
30 Jan 2023
REC opinion
Further Information Favourable Opinion