The impact of 12 minute walk test on McArdle patients v.1
Research type
Research Study
Full title
An exploration of the 12 minute walk test and its impact on McArdle patients' confidence levels and pain descriptions: A mixed methods study
IRAS ID
199340
Contact name
Ros Quinlivan
Contact email
Sponsor organisation
UCLH
Duration of Study in the UK
0 years, 3 months, 14 days
Research summary
McArdle disease is a form of hereditary myopathy. In McArdle disease, the clinical picture is dominated by exercise intolerance that presents with muscle pain (myalgia), stiffness or weakness of the exercising muscle group, as well as premature fatigue. Pain perceptions and exercise intolerance represent significant challenges in the management of McArdle disease.
The aim of this single center, observational mixed methods study will be to investigate if a 12 minute walk test, which is administered routinely in clinic, can have an impact on confidence levels in people with McArdle disease.
Another aim of the study will be to explore how people with McArdle disease describe their main symptom which is pain and how they can differentiate this from the normal pain that occurs in all people after exercise, otherwise known as delayed onset muscle soreness (DOMS).
The study will include adult (aged 16 years or above) McArdle patients, who: (1) have been diagnosed on the basis of genetic tests; are (2) medically stable; and (3) have McArdle disease as their main problem causing their disability. Twenty-one subjects will be recruited for this study. Participation in the study will involve filling in questionnaires before and after a 12 minute walk test performed as part of patients’ routine McArdle clinic appointment. We anticipate that the time taken to perform these tasks will be about 30 minutes in total. They will be asked to repeat the questionnaires a second time 40 days after their initial completion. This will enable the investigators to see how participants’ answers change with time. We will give participants a stamped addressed envelope so that they can post their completed questionnaires back to us.
The data collected in this study will be useful for developing and disseminating accurate information about McArdle disease to clinicians and people with the condition. The ultimate aim is to improve the patient care. We expect that 21 participants will take part in this study.
REC name
London - Brent Research Ethics Committee
REC reference
16/LO/0491
Date of REC Opinion
30 Mar 2016
REC opinion
Favourable Opinion