Quality of life in adults with muscular dystrophy

Matthew F. Jacques, Rachel C. Stockley, Gladys L. Onambele-Pearson, Neil D. Reeves, Georgina K. Stebbings, Ellen A. Dawson, Lynne Groves, Christopher I. Morse
2019 Health and Quality of Life Outcomes  
Quality of life in adults with muscular dystrophy. http://researchonline.ljmu.ac.uk/id/eprint/11069/ Article LJMU has developed LJMU Research Online for users to access the research output of the University more effectively. 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
more » ... re 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 mentalhealth. 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.
doi:10.1186/s12955-019-1177-y fatcat:vr7c7ks7evg45jpmrjhtnkfuta