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Quality of life in adults with muscular dystrophy

Jacques, Matthew F.; Stockley, Rachel C.; Onambele-Pearson, Gladys L.; Reeves, Neil D.; Stebbings, Georgina K.; Dawson, Ellen A.; Groves, Lynne; Morse, Christopher I.


Rachel C. Stockley

Gladys L. Onambele-Pearson

Neil D. Reeves

Georgina K. Stebbings

Ellen A. Dawson

Lynne Groves

Christopher I. Morse


Background: Muscle weakness is a defining characteristic of Muscular Dystrophy (MD); however, yet while speculated, objective measures of muscle weakness has not been reported in relation to quality of life in adults with MD. Objectives: 1) compare the self-reported QoL of adults with Duchenne MD (DMD), Beckers MD (BMD), Limb-Girdle MD (LGMD) and Fascioscapulohumeral MD (FSHD, and a non-MD (CTRL) group; 2) present and compare between groups measures of Impairment (Muscle Strength and Activities of Daily Living) and Perception (Fatigue, Pain and Self-Efficacy); and 3) identify associations between QoL domains and measures of Impairment and Perception (See above). Methods: Seventy-Five males, including MD classifications DMD, BMD, LGMD, FSHD and CTRL, completed measures for QoL, Knee-Extension Maximal Voluntary Contraction (KEMVC), Fatigue, Pain, Self-Efficacy and Activities of Daily Living (ADL). Results: QoL was lower across many domains in MD than CTRL. FSHD scored lower than DMD for mental wellbeing domains. KEMVC associated with Physical-Function domain for BMD. Pain, Self-Efficacy and ADLs associated with QoL domains, with Fatigue the most consistently associated. Conclusion: The present study identified differences between MD classifications within self-perceptions of mental-health. Muscle weakness is a defining feature of MD; however, it doesn't define QoL in adults with MD. A greater understanding of mental wellbeing, independence, and management of fatigue and pain, are required to improve QoL for adults with MD.


Jacques, M. F., Stockley, R. C., Onambele-Pearson, G. L., Reeves, N. D., Stebbings, G. K., Dawson, E. A., …Morse, C. I. (2019). Quality of life in adults with muscular dystrophy. Health and Quality of Life Outcomes, 17, Article 121.

Journal Article Type Article
Acceptance Date Jun 6, 2019
Online Publication Date Jul 15, 2019
Publication Date Jul 15, 2019
Deposit Date Nov 26, 2022
Publicly Available Date Nov 28, 2022
Electronic ISSN 1477-7525
Publisher Springer Verlag
Peer Reviewed Peer Reviewed
Volume 17
Article Number 121
Keywords Public Health, Environmental and Occupational Health; General Medicine
Public URL
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