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Gepubliceerd in: Quality of Life Research 6/2022

27-11-2021

Impact and predictors of quality of life in adults diagnosed with a genetic muscle disorder: a nationwide population-based study

Auteurs: Alice Theadom, Miriam Rodrigues, Annemarei Ranta, Gemma Poke, Donald Love, Kelly Jones, Braden Te Ao, Graeme Hammond-Tooke, Priya Parmar, Gina O’Grady, Richard Roxburgh, the MDPrev Research Group

Gepubliceerd in: Quality of Life Research | Uitgave 6/2022

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Abstract

Objectives

To determine the impact of genetic muscle disorders and identify the sociodemographic, illness, and symptom factors influencing quality of life.

Methods

Adults (aged 16–90 years) with a confirmed clinical or molecular diagnosis of a genetic muscle disorder identified as part of a nationwide prevalence study were invited to complete an assessment of the impact of their condition. Quality of life was measured using the World Health Organization Quality of Life questionnaire. Impact was measured via the prevalence of symptoms and comparisons of quality of life against New Zealand norms. Multivariate regression models were used to identify the most significant predictors of quality of life domains.

Results

490/596 participants completed the assessment (82.2% consent rate). Quality of life was lower than the general population on physical (t = 9.37 p < 0.0001, d = 0.54) social (t = 2.27 p = 0.02, d = 0.13) and environmental domains (t = 2.28 p = 0.02, d = 0.13), although effect sizes were small. No difference was found on the psychological domain (t = − 1.17 p = 0.24, d = 0.07). Multivariate regression models (predicting 42%–64% of the variance) revealed personal factors (younger age, being in employment and in a relationship), symptoms (lower pain, fatigue, and sleep difficulties), physical health (no need for ventilation support, fewer activity limitations and no comorbidities), and psychosocial factors (lower depression, anxiety, behavioural dyscontrol and higher self-efficacy, satisfaction with health care and social support) contributed to improved quality of life.

Conclusions

A range of factors influence the quality of life in adults diagnosed with a genetic muscle disorder and some may serve as targets for multi-faceted intervention.
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Metagegevens
Titel
Impact and predictors of quality of life in adults diagnosed with a genetic muscle disorder: a nationwide population-based study
Auteurs
Alice Theadom
Miriam Rodrigues
Annemarei Ranta
Gemma Poke
Donald Love
Kelly Jones
Braden Te Ao
Graeme Hammond-Tooke
Priya Parmar
Gina O’Grady
Richard Roxburgh
the MDPrev Research Group
Publicatiedatum
27-11-2021
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 6/2022
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-021-03046-2

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