Quality of life and informal care burden associated with duchenne muscular dystrophy in Portugal: the COIDUCH study

Autor:	Valeska Andreozzi, Pedro Labisa, Melina Mota, Susana Monteiro, Rita Alves, João Almeida, Björn Vandewalle, Jorge Felix, Katharina Buesch, Hugo Canhão, Igor Beitia Ortiz de Zarate
Jazyk:	angličtina
Rok vydání:	2022
Předmět:	Duchenne muscular dystrophy Disease progression Quality of life Informal care burden Computer applications to medicine. Medical informatics R858-859.7
Zdroj:	Health and Quality of Life Outcomes, Vol 20, Iss 1, Pp 1-7 (2022)
Druh dokumentu:	article
ISSN:	1477-7525
DOI:	10.1186/s12955-022-01941-x
Popis:	Abstract Background To describe the reduced health-related quality of life (HRQoL) of duchenne muscular dystrophy (DMD) patients and their caregiver burden and to present its relationship with disease progression. Methods This cross-sectional study assessed patient HRQoL with the 3-level version of the EuroQol-5D (EQ-5D-3L) and caregiver burden with the Work Productivity and Activity Impairment: General Health questionnaire. DMD patients and their caregivers were identified through Portuguese Neuromuscular Association (APN). Results A total of 46 DMD main caregivers, of eight ambulant and 38 non-ambulant patients, completed the questionnaires. Over half (58.7%) of all non-ambulant patients were on ventilation support, either full-time (15.2%) or non full-time (43.5%). Non-ambulant patients had a lower mean utility scores than ambulant patients (− 0.05 versus 0.51, p value
Databáze:	Directory of Open Access Journals
Externí odkaz:	https://doaj.org/article/c67d00e59b4b4bf8a6ac41802f3f6d9c Zobrazit plný text záznamu View record in DOAJ Plný text ve formátu PDF Plný text ve formátu HTML
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