학술논문
Quality of life and informal care burden associated with duchenne muscular dystrophy in Portugal: the COIDUCH study
Document Type
article
Author
Source
Health and Quality of Life Outcomes, Vol 20, Iss 1, Pp 1-7 (2022)
Subject
Language
English
ISSN
1477-7525
Abstract
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