Quality of Life Study v1.0
Research type
Research Study
Full title
Use of Peds QL Questionnaire to assess Quality of Life in boys/young people with Duchenne Muscular Dystrophy (DMD). A feasibility study for using the questionnaire in clinical setting.
IRAS ID
205947
Contact name
Alexandra Baxter
Contact email
Duration of Study in the UK
0 years, 4 months, 4 days
Research summary
Duchenne Muscular Dystrophy (DMD) is a life-limiting condition, in which males who are affected suffer progressive muscle weakness and mild cognitive impairment. Patients with DMD are usually wheelchair-bound by the age of twelve, and their average life expectancy is 27 years. However, advances in medication and healthcare have increased this to about 33 years.
This study aims to assess the PedsQL 3.0 tool in evaluating the quality of life in boys and young men with DMD, and to see if there is a correlation between the answers of children and their parents. This will be done by administering similar questionnaires to both the patients and their parents. Through this study we will see if the PedsQL 3.0, which uses the Likert Scale, is acceptable and feasible for use in clinical practice.
The study will include boys and young men up to age 15 who have been affected by DMD, and they will be recruited at the outpatient clinic in the Royal Hospital of Sick Children. Information leaflets will be given to both the parents and the children, along with a consent form. Only patients who are willing to be involved and sign the consent form will be interviewed for this study. The interviews will take place in private rooms on-site, and would involve the participants filling in a questionnaire. Each questionnaire should take less than 45 minutes to complete.
The analysis of the information collected will be done qualitatively and presented in a 3000-word report, as part of a Student Selected Component (SSC) for the undergraduate medical degree in the University of Edinburgh.
REC name
South East Scotland REC 02
REC reference
17/SS/0025
Date of REC Opinion
16 Mar 2017
REC opinion
Further Information Favourable Opinion