Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation

Abstract Background This study examined the impact of Duchenne muscular dystrophy (DMD) on family-member caregivers in terms of quality of life, life stress, and indirect costs, as compared to a stratified comparison group of parents of similar-age children without DMD. Methods A web-based survey in...

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Autores principales:	Carolyn E. Schwartz, Roland B. Stark, Ivana F. Audhya, Katherine L. Gooch
Formato:	article
Lenguaje:	EN
Publicado:	SpringerOpen 2021
Materias:	Duchenne muscular dystrophy Impact Caregivers Quality of life Resilience Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/bc2b7f86292f48379b318d9bf5310196
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spelling	oai:doaj.org-article:bc2b7f86292f48379b318d9bf53101962021-11-21T12:28:34ZCharacterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation10.1186/s41687-021-00386-y2509-8020https://doaj.org/article/bc2b7f86292f48379b318d9bf53101962021-11-01T00:00:00Zhttps://doi.org/10.1186/s41687-021-00386-yhttps://doaj.org/toc/2509-8020Abstract Background This study examined the impact of Duchenne muscular dystrophy (DMD) on family-member caregivers in terms of quality of life, life stress, and indirect costs, as compared to a stratified comparison group of parents of similar-age children without DMD. Methods A web-based survey included DMD caregivers and a nationally representative comparison group of parents of children without DMD stratified by Child Age Group. Outcomes included quality of life, resilience, caregiver impact, stressful life events, financial strain, out-of-pocket expenditures, work productivity and unrealized ambitions. General linear models assessed the main effect of Caregiver Group and the interaction of Caregiver Group with Child-Age-Group, after adjusting for demographic covariates. Results Compared to parents without a DMD child, DMD Caregivers reported better physical health but worse mental health, positive affect/well-being, environmental mastery, difficulty paying bills, and more hours missed from work. Providing caregiving support for DMD teenagers was the most challenging. DMD caregivers curtailed their educational and professional ambitions, and modified their homes to accommodate the disability associated with DMD. Their non-DMD children had to make sacrifices as well. Nonetheless, in resilience and life stress, DMD caregivers were comparable to the comparison group, and showed consistent levels of positive emotions across the age of their DMD child. Conclusion DMD caregivers fared worse on most outcomes and faced more hurdles in work life. They face constraints and hidden costs that impact their health and financial well-being. Caregivers of teenagers with DMD reported higher impact. Nonetheless, parents of DMD children of all ages maintained notable resilience and positivity.Carolyn E. SchwartzRoland B. StarkIvana F. AudhyaKatherine L. GoochSpringerOpenarticleDuchenne muscular dystrophyImpactCaregiversQuality of lifeResiliencePublic aspects of medicineRA1-1270ENJournal of Patient-Reported Outcomes, Vol 5, Iss 1, Pp 1-16 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Duchenne muscular dystrophy Impact Caregivers Quality of life Resilience Public aspects of medicine RA1-1270
spellingShingle	Duchenne muscular dystrophy Impact Caregivers Quality of life Resilience Public aspects of medicine RA1-1270 Carolyn E. Schwartz Roland B. Stark Ivana F. Audhya Katherine L. Gooch Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation
description	Abstract Background This study examined the impact of Duchenne muscular dystrophy (DMD) on family-member caregivers in terms of quality of life, life stress, and indirect costs, as compared to a stratified comparison group of parents of similar-age children without DMD. Methods A web-based survey included DMD caregivers and a nationally representative comparison group of parents of children without DMD stratified by Child Age Group. Outcomes included quality of life, resilience, caregiver impact, stressful life events, financial strain, out-of-pocket expenditures, work productivity and unrealized ambitions. General linear models assessed the main effect of Caregiver Group and the interaction of Caregiver Group with Child-Age-Group, after adjusting for demographic covariates. Results Compared to parents without a DMD child, DMD Caregivers reported better physical health but worse mental health, positive affect/well-being, environmental mastery, difficulty paying bills, and more hours missed from work. Providing caregiving support for DMD teenagers was the most challenging. DMD caregivers curtailed their educational and professional ambitions, and modified their homes to accommodate the disability associated with DMD. Their non-DMD children had to make sacrifices as well. Nonetheless, in resilience and life stress, DMD caregivers were comparable to the comparison group, and showed consistent levels of positive emotions across the age of their DMD child. Conclusion DMD caregivers fared worse on most outcomes and faced more hurdles in work life. They face constraints and hidden costs that impact their health and financial well-being. Caregivers of teenagers with DMD reported higher impact. Nonetheless, parents of DMD children of all ages maintained notable resilience and positivity.
format	article
author	Carolyn E. Schwartz Roland B. Stark Ivana F. Audhya Katherine L. Gooch
author_facet	Carolyn E. Schwartz Roland B. Stark Ivana F. Audhya Katherine L. Gooch
author_sort	Carolyn E. Schwartz
title	Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation
title_short	Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation
title_full	Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation
title_fullStr	Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation
title_full_unstemmed	Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation
title_sort	characterizing the quality-of-life impact of duchenne muscular dystrophy on caregivers: a case-control investigation
publisher	SpringerOpen
publishDate	2021
url	https://doaj.org/article/bc2b7f86292f48379b318d9bf5310196
work_keys_str_mv	AT carolyneschwartz characterizingthequalityoflifeimpactofduchennemusculardystrophyoncaregiversacasecontrolinvestigation AT rolandbstark characterizingthequalityoflifeimpactofduchennemusculardystrophyoncaregiversacasecontrolinvestigation AT ivanafaudhya characterizingthequalityoflifeimpactofduchennemusculardystrophyoncaregiversacasecontrolinvestigation AT katherinelgooch characterizingthequalityoflifeimpactofduchennemusculardystrophyoncaregiversacasecontrolinvestigation
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Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation

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