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. 2019 Jul 15;17(1):121.
doi: 10.1186/s12955-019-1177-y.

Quality of life in adults with muscular dystrophy

Matthew F Jacques  1 , Rachel C Stockley  2 , Gladys L Onambele-Pearson  3 , Neil D Reeves  3 , Georgina K Stebbings  3 , Ellen A Dawson  4 , Lynne Groves  5 , Christopher I Morse  3
Affiliations

Quality of life in adults with muscular dystrophy

Matthew F Jacques et al. Health Qual Life Outcomes. .

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.

Keywords: Activities of daily living; Fatigue; Muscular dystrophy; Quality of life; Self-efficacy; Strength.

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Conflict of interest statement

The authors declare that they have no competing interests.

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