Quality of Life in Adults Living with Duchenne Muscular Dystrophy
Research type
Research Study
Full title
Quality of Life in Adults Living with Duchenne Muscular Dystrophy
IRAS ID
220389
Contact name
Emma Carduff
Contact email
Sponsor organisation
Cardiff University
Duration of Study in the UK
0 years, 7 months, 17 days
Research summary
This study asks “what is it like for adult men to live longer with Duchenne muscular dystrophy? Are these men affected physically, mentally and socially, impacting on their overall quality of life?”.
Duchenne muscular dystrophy (DMD) is a rare neuromuscular condition affecting males; caused by a genetic mutation, DMD results in loss of muscle strength and the ability to walk. There is no cure for this condition but improvements in medical treatment means that men are living longer with DMD with increasing disability and dependence on others.
My research questions asks if these men are experiencing satisfaction in their lives in terms of physical health, family and relationships, employment, and environment, and if not, how this can be improved.
Little research has been done looking at quality of life (QoL) in this patient group and many of the questionnaires or tools available are not designed to capture the elements of importance to those living with DMD. This study will use a questionnaire to investigate QoL before conducting a semi-structured interview to gain further insight, identifying key and common themes.
Men with Duchenne muscular dystrophy, living in the West of Scotland, aged over 25 will be eligible. They should speak English, be able to give consent and have the means to communicate with the researcher independently. Those not fitting the inclusion criteria or who are too unwell to participate, will be excluded from the study.
The participants will remain in the study from recruitment for a maximum period of 6 months. The process will involve an initial telephone call to answer questions raised from the patient information leaflet and to arrange an interview at their home or at a mutually agreeable location. The details of the interview may be discussed by telephone if further clarification is needed.
REC name
London - Fulham Research Ethics Committee
REC reference
17/LO/0324
Date of REC Opinion
22 Feb 2017
REC opinion
Favourable Opinion