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Quality of life and informal care burden associated with duchenne muscular dystrophy in Portugal: the COIDUCH study
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 Eur...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8896234/ https://www.ncbi.nlm.nih.gov/pubmed/35241084 http://dx.doi.org/10.1186/s12955-022-01941-x |
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author | Andreozzi, Valeska Labisa, Pedro Mota, Melina Monteiro, Susana Alves, Rita Almeida, João Vandewalle, Björn Felix, Jorge Buesch, Katharina Canhão, Hugo Beitia Ortiz de Zarate, Igor |
author_facet | Andreozzi, Valeska Labisa, Pedro Mota, Melina Monteiro, Susana Alves, Rita Almeida, João Vandewalle, Björn Felix, Jorge Buesch, Katharina Canhão, Hugo Beitia Ortiz de Zarate, Igor |
author_sort | Andreozzi, Valeska |
collection | PubMed |
description | 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 < 0.001). Caregivers of non-ambulant patients reported a significant mean daily activity impairment as compared to caregivers of ambulant patients (68% versus 23%, p value < 0.001). Among non-ambulant patients, both utility scores and caregiver impairment appeared to deteriorate according to a higher need for ventilation support, however, these results were not statistically significant. CONCLUSIONS: These results emphasise the significant negative impact that DMD progression has on the patient HRQoL, as well as caregivers’ ability to conduct their daily activities. Therapeutic options that stop or slow the disease progression could have a beneficial impact for both patients and caregivers. |
format | Online Article Text |
id | pubmed-8896234 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-88962342022-03-10 Quality of life and informal care burden associated with duchenne muscular dystrophy in Portugal: the COIDUCH study Andreozzi, Valeska Labisa, Pedro Mota, Melina Monteiro, Susana Alves, Rita Almeida, João Vandewalle, Björn Felix, Jorge Buesch, Katharina Canhão, Hugo Beitia Ortiz de Zarate, Igor Health Qual Life Outcomes Research 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 < 0.001). Caregivers of non-ambulant patients reported a significant mean daily activity impairment as compared to caregivers of ambulant patients (68% versus 23%, p value < 0.001). Among non-ambulant patients, both utility scores and caregiver impairment appeared to deteriorate according to a higher need for ventilation support, however, these results were not statistically significant. CONCLUSIONS: These results emphasise the significant negative impact that DMD progression has on the patient HRQoL, as well as caregivers’ ability to conduct their daily activities. Therapeutic options that stop or slow the disease progression could have a beneficial impact for both patients and caregivers. BioMed Central 2022-03-03 /pmc/articles/PMC8896234/ /pubmed/35241084 http://dx.doi.org/10.1186/s12955-022-01941-x Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Andreozzi, Valeska Labisa, Pedro Mota, Melina Monteiro, Susana Alves, Rita Almeida, João Vandewalle, Björn Felix, Jorge Buesch, Katharina Canhão, Hugo Beitia Ortiz de Zarate, Igor Quality of life and informal care burden associated with duchenne muscular dystrophy in Portugal: the COIDUCH study |
title | Quality of life and informal care burden associated with duchenne muscular dystrophy in Portugal: the COIDUCH study |
title_full | Quality of life and informal care burden associated with duchenne muscular dystrophy in Portugal: the COIDUCH study |
title_fullStr | Quality of life and informal care burden associated with duchenne muscular dystrophy in Portugal: the COIDUCH study |
title_full_unstemmed | Quality of life and informal care burden associated with duchenne muscular dystrophy in Portugal: the COIDUCH study |
title_short | Quality of life and informal care burden associated with duchenne muscular dystrophy in Portugal: the COIDUCH study |
title_sort | quality of life and informal care burden associated with duchenne muscular dystrophy in portugal: the coiduch study |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8896234/ https://www.ncbi.nlm.nih.gov/pubmed/35241084 http://dx.doi.org/10.1186/s12955-022-01941-x |
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