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.

Abstract

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.

Citation

Jacques, M. F., Stockley, R. C., Onambele-Pearson, G. L., Reeves, N. D., Stebbings, G. K., Dawson, E. A., Groves, L., & Morse, C. I. (2019). Quality of life in adults with muscular dystrophy. Health and Quality of Life Outcomes, 17, Article 121. https://doi.org/10.1186/s12955-019-1177-y

• 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
• DOI: https://doi.org/10.1186/s12955-019-1177-y
• Keywords: Public Health, Environmental and Occupational Health; General Medicine
• Public URL: https://nottingham-repository.worktribe.com/output/14040823
• Publisher URL: https://hqlo.biomedcentral.com/articles/10.1186/s12955-019-1177-y