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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2019

Open Access 01-12-2019 | Muscular Dystrophy | Research

Quality of life in adults with muscular dystrophy

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

Published in: Health and Quality of Life Outcomes | Issue 1/2019

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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.
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Metadata
Title
Quality of life in adults with muscular dystrophy
Authors
Matthew F. Jacques
Rachel C. Stockley
Gladys L. Onambele-Pearson
Neil D. Reeves
Georgina K. Stebbings
Ellen A. Dawson
Lynne Groves
Christopher I. Morse
Publication date
01-12-2019
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2019
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-019-1177-y

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