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Jacques, MF, Stockley, RC, Onambele-Pearson, GL, Reeves, ND, Stebbings, GK, Dawson, EA, Groves, L and Morse, CI (2019) Quality of life in adults with muscular dystrophy. Health and Quality of Life Outcomes, 17 (1). ISSN 1477-7525
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Jacques et al 2019 QoL Muscular Dystrophy.pdf - Published Version Available under License Creative Commons Attribution. Download (670kB) | Preview |
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.
| Item Type: | Article |
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| Uncontrolled Keywords: | 1117 Public Health and Health Services |
| Subjects: | R Medicine > RC Internal medicine > RC1200 Sports Medicine |
| Divisions: | Sport & Exercise Sciences |
| Publisher: | BMC Part of Springer Nature |
| Related URLs: | |
| Date Deposited: | 19 Jul 2019 08:43 |
| Last Modified: | 04 Sep 2021 09:08 |
| DOI or ID number: | 10.1186/s12955-019-1177-y |
| URI: | https://researchonline.ljmu.ac.uk/id/eprint/11069 |
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