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

Quality of life in adults with muscular dystrophy.

Author information

1
Musculoskeletal Science & Sports Medicine Research Centre, School of Healthcare Science, Faculty of Science and Engineering, Manchester Metropolitan University, Manchester, UK. Matthew.Jacques@stu.mmu.ac.uk.
2
School of Nursing, University of Central Lancashire, Preston, UK.
3
Musculoskeletal Science & Sports Medicine Research Centre, School of Healthcare Science, Faculty of Science and Engineering, Manchester Metropolitan University, Manchester, UK.
4
Research Institute for Sport and Exercise Science, Liverpool John Moores University, Liverpool, UK.
5
The Neuromuscular Centre, Winsford, Cheshire, UK.

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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