Impact and predictors of quality of life in adults diagnosed with a genetic muscle disorder: a nationwide population-based study.
Adults
Muscular dystrophy
Neuromuscular disease
Outcomes
Quality of life
Journal
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
ISSN: 1573-2649
Titre abrégé: Qual Life Res
Pays: Netherlands
ID NLM: 9210257
Informations de publication
Date de publication:
Jun 2022
Jun 2022
Historique:
accepted:
18
11
2021
pubmed:
28
11
2021
medline:
18
5
2022
entrez:
27
11
2021
Statut:
ppublish
Résumé
To determine the impact of genetic muscle disorders and identify the sociodemographic, illness, and symptom factors influencing quality of life. 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. 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. 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.
Identifiants
pubmed: 34837601
doi: 10.1007/s11136-021-03046-2
pii: 10.1007/s11136-021-03046-2
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1657-1666Subventions
Organisme : health research council of new zealand
ID : HRC14/399
Investigateurs
Alice Theadom
(A)
Kelly Jones
(K)
Braden Te Ao
(BT)
Kerry Walker
(K)
Miriam Rodrigues
(M)
Richard Roxburgh
(R)
Gina O'Grady
(G)
Priya Parmar
(P)
Chris Higgins
(C)
Valery Feigin
(V)
Annemarei Ranta
(A)
Rita Krishnamurthi
(R)
Alain Vandal
(A)
Paul Brown
(P)
Donald Love
(D)
Jenny Stewart
(J)
Gemma Poke
(G)
Graeme Hammond-Tooke
(G)
Informations de copyright
© 2021. The Author(s), under exclusive licence to Springer Nature Switzerland AG.
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