Observational study of patients in Spain with amyotrophic lateral sclerosis: correlations between clinical status, quality of life, and dignity

Background: Amyotrophic lateral sclerosis (ALS) is an incurable neurodegenerative disease that dramatically affects patients' quality of life (QoL) and dignity of life (DoL). We aimed to study the impact of ALS on QoL and DoL and how these evolve throughout the duration of the disease. Methods:...

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Autores: Martínez Campo, Yolanda, Homedes, Christian, Lazaro, Ana, Alarcón, Raquel, Campo, David, Riera, Mariona, Domínguez, Raúl, Povedano, Mònica, Casasnovas Pons, Carlos
Formato: artículo
Estado:Versión publicada
Fecha de publicación:2017
País:España
Recursos:Universidad de Barcelona
Repositorio:Dipòsit Digital de la UB
OAI Identifier:oai:diposit.ub.edu:2445/124163
Acesso em linha:https://hdl.handle.net/2445/124163
Access Level:acceso abierto
Palavra-chave:Esclerosi lateral amiotròfica
Malalties neurodegeneratives
Qualitat de vida
Amyotrophic lateral sclerosis
Neurodegenerative Diseases
Quality of life
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spelling Observational study of patients in Spain with amyotrophic lateral sclerosis: correlations between clinical status, quality of life, and dignityMartínez Campo, YolandaHomedes, ChristianLazaro, AnaAlarcón, RaquelCampo, DavidRiera, MarionaDomínguez, RaúlPovedano, MònicaCasasnovas Pons, CarlosEsclerosi lateral amiotròficaMalalties neurodegenerativesQualitat de vidaAmyotrophic lateral sclerosisNeurodegenerative DiseasesQuality of lifeBackground: Amyotrophic lateral sclerosis (ALS) is an incurable neurodegenerative disease that dramatically affects patients' quality of life (QoL) and dignity of life (DoL). We aimed to study the impact of ALS on QoL and DoL and how these evolve throughout the duration of the disease. Methods: First, we performed an observational, descriptive study of 43 patients with ALS recruited from the ALS unit at our center and compared them with 20 healthy age- and sex-matched controls. Second, we performed a prospective cohort study, following up 23 patients with ALS over 3 months. All participants completed questionnaires about their functional status, QoL, and DoL. Results: QoL and DoL were significantly worse in the ALS group than in controls (both p < 0.001). During the three-month follow-up in the ALS cohort, statistically significant declines were observed in clinical status and QoL. For clinical status, median scores on the ALS Functional Rating scale changed from 30.95 points at baseline to 27.24 points after 3 months (p = 0.0003). For QoL, median scores on the ALS Assessment Questionnaire changed from 124.19 points at baseline to 131.81 at 3 months (p = 0.0062). However, no significant differences were found between the DoL scores at baseline (48. 14 points) and 3 months (45 points) (p-value = 0.12). Conclusions: ALS is a neurodegenerative disease that affects QoL and DoL alike. We found that clinical status and QoL both deteriorated in patients with ALS as the disease progressed, but that DoL was preserved. However, our findings are limited by small sample sizes. The preservation of DoL may be due to multiple factors, including the therapies provided by the ALS unit. These findings suggest that alongside QoL, DoL may be an important target in the management and care of ALS patients.BioMed Central2017info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://hdl.handle.net/2445/124163Articles publicats en revistes (Ciències Clíniques)reponame:Dipòsit Digital de la UBinstname:Universidad de BarcelonaInglésReproducció del document publicat a: https://doi.org/10.1186/s12904-017-0260-6BMC Palliative Care, 2017, vol. 16, num. 75https://doi.org/10.1186/s12904-017-0260-6cc-by (c) Martínez Campo et al., 2017http://creativecommons.org/licenses/by/3.0/esinfo:eu-repo/semantics/openAccessoai:diposit.ub.edu:2445/1241632026-05-27T06:46:51Z
dc.title.none.fl_str_mv Observational study of patients in Spain with amyotrophic lateral sclerosis: correlations between clinical status, quality of life, and dignity
title Observational study of patients in Spain with amyotrophic lateral sclerosis: correlations between clinical status, quality of life, and dignity
spellingShingle Observational study of patients in Spain with amyotrophic lateral sclerosis: correlations between clinical status, quality of life, and dignity
Martínez Campo, Yolanda
Esclerosi lateral amiotròfica
Malalties neurodegeneratives
Qualitat de vida
Amyotrophic lateral sclerosis
Neurodegenerative Diseases
Quality of life
title_short Observational study of patients in Spain with amyotrophic lateral sclerosis: correlations between clinical status, quality of life, and dignity
title_full Observational study of patients in Spain with amyotrophic lateral sclerosis: correlations between clinical status, quality of life, and dignity
title_fullStr Observational study of patients in Spain with amyotrophic lateral sclerosis: correlations between clinical status, quality of life, and dignity
title_full_unstemmed Observational study of patients in Spain with amyotrophic lateral sclerosis: correlations between clinical status, quality of life, and dignity
title_sort Observational study of patients in Spain with amyotrophic lateral sclerosis: correlations between clinical status, quality of life, and dignity
dc.creator.none.fl_str_mv Martínez Campo, Yolanda
Homedes, Christian
Lazaro, Ana
Alarcón, Raquel
Campo, David
Riera, Mariona
Domínguez, Raúl
Povedano, Mònica
Casasnovas Pons, Carlos
author Martínez Campo, Yolanda
author_facet Martínez Campo, Yolanda
Homedes, Christian
Lazaro, Ana
Alarcón, Raquel
Campo, David
Riera, Mariona
Domínguez, Raúl
Povedano, Mònica
Casasnovas Pons, Carlos
author_role author
author2 Homedes, Christian
Lazaro, Ana
Alarcón, Raquel
Campo, David
Riera, Mariona
Domínguez, Raúl
Povedano, Mònica
Casasnovas Pons, Carlos
author2_role author
author
author
author
author
author
author
author
dc.subject.none.fl_str_mv Esclerosi lateral amiotròfica
Malalties neurodegeneratives
Qualitat de vida
Amyotrophic lateral sclerosis
Neurodegenerative Diseases
Quality of life
topic Esclerosi lateral amiotròfica
Malalties neurodegeneratives
Qualitat de vida
Amyotrophic lateral sclerosis
Neurodegenerative Diseases
Quality of life
description Background: Amyotrophic lateral sclerosis (ALS) is an incurable neurodegenerative disease that dramatically affects patients' quality of life (QoL) and dignity of life (DoL). We aimed to study the impact of ALS on QoL and DoL and how these evolve throughout the duration of the disease. Methods: First, we performed an observational, descriptive study of 43 patients with ALS recruited from the ALS unit at our center and compared them with 20 healthy age- and sex-matched controls. Second, we performed a prospective cohort study, following up 23 patients with ALS over 3 months. All participants completed questionnaires about their functional status, QoL, and DoL. Results: QoL and DoL were significantly worse in the ALS group than in controls (both p < 0.001). During the three-month follow-up in the ALS cohort, statistically significant declines were observed in clinical status and QoL. For clinical status, median scores on the ALS Functional Rating scale changed from 30.95 points at baseline to 27.24 points after 3 months (p = 0.0003). For QoL, median scores on the ALS Assessment Questionnaire changed from 124.19 points at baseline to 131.81 at 3 months (p = 0.0062). However, no significant differences were found between the DoL scores at baseline (48. 14 points) and 3 months (45 points) (p-value = 0.12). Conclusions: ALS is a neurodegenerative disease that affects QoL and DoL alike. We found that clinical status and QoL both deteriorated in patients with ALS as the disease progressed, but that DoL was preserved. However, our findings are limited by small sample sizes. The preservation of DoL may be due to multiple factors, including the therapies provided by the ALS unit. These findings suggest that alongside QoL, DoL may be an important target in the management and care of ALS patients.
publishDate 2017
dc.date.none.fl_str_mv 2017
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv https://hdl.handle.net/2445/124163
url https://hdl.handle.net/2445/124163
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv Reproducció del document publicat a: https://doi.org/10.1186/s12904-017-0260-6
BMC Palliative Care, 2017, vol. 16, num. 75
https://doi.org/10.1186/s12904-017-0260-6
dc.rights.none.fl_str_mv cc-by (c) Martínez Campo et al., 2017
http://creativecommons.org/licenses/by/3.0/es
info:eu-repo/semantics/openAccess
rights_invalid_str_mv cc-by (c) Martínez Campo et al., 2017
http://creativecommons.org/licenses/by/3.0/es
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv BioMed Central
publisher.none.fl_str_mv BioMed Central
dc.source.none.fl_str_mv Articles publicats en revistes (Ciències Clíniques)
reponame:Dipòsit Digital de la UB
instname:Universidad de Barcelona
instname_str Universidad de Barcelona
reponame_str Dipòsit Digital de la UB
collection Dipòsit Digital de la UB
repository.name.fl_str_mv
repository.mail.fl_str_mv
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score 15.300719

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