A survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia

Aim: To investigate the patients' perception of their disease, its management and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis (ALS) in Malaysia. Patients & methods: An online survey comprising 42 questions was conducted on ALS patients during the...

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Autores principales: Edgar, Suzanna, Abdul-Aziz, Nur Adilah, Loh, Ee Chin, Capelle, David, Goh, Khean-Jin, Latif, Lydia Abdul, Shahrizaila, Nortina, Ahmad-Annuar, Azlina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Future Medicine Ltd 2021
Materias:
Preliminary Communication
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8320654/
https://www.ncbi.nlm.nih.gov/pubmed/34284643
http://dx.doi.org/10.2217/nmt-2021-0004
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author Edgar, Suzanna
Abdul-Aziz, Nur Adilah
Loh, Ee Chin
Capelle, David
Goh, Khean-Jin
Latif, Lydia Abdul
Shahrizaila, Nortina
Ahmad-Annuar, Azlina
author_facet Edgar, Suzanna
Abdul-Aziz, Nur Adilah
Loh, Ee Chin
Capelle, David
Goh, Khean-Jin
Latif, Lydia Abdul
Shahrizaila, Nortina
Ahmad-Annuar, Azlina
author_sort Edgar, Suzanna
collection PubMed
description Aim: To investigate the patients' perception of their disease, its management and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis (ALS) in Malaysia. Patients & methods: An online survey comprising 42 questions was conducted on ALS patients during the peak of the COVID-19 pandemic. Results: Responses were received from 37/60 (62%) participants with ALS directly or through their caregivers. During the COVID-19 pandemic, two-thirds of patients were negatively impacted by the sudden disruption to their hospital appointments, rehabilitation sessions and reduced social interactions. Conclusion: This study provided insight into patients' perception of their care and management of ALS in Malaysia which will facilitate in implementing changes that can improve care to persons living with this devastating illness.
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spelling pubmed-83206542021-07-30 A survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia Edgar, Suzanna Abdul-Aziz, Nur Adilah Loh, Ee Chin Capelle, David Goh, Khean-Jin Latif, Lydia Abdul Shahrizaila, Nortina Ahmad-Annuar, Azlina Neurodegener Dis Manag Preliminary Communication Aim: To investigate the patients' perception of their disease, its management and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis (ALS) in Malaysia. Patients & methods: An online survey comprising 42 questions was conducted on ALS patients during the peak of the COVID-19 pandemic. Results: Responses were received from 37/60 (62%) participants with ALS directly or through their caregivers. During the COVID-19 pandemic, two-thirds of patients were negatively impacted by the sudden disruption to their hospital appointments, rehabilitation sessions and reduced social interactions. Conclusion: This study provided insight into patients' perception of their care and management of ALS in Malaysia which will facilitate in implementing changes that can improve care to persons living with this devastating illness. Future Medicine Ltd 2021-07-21 2021-06 /pmc/articles/PMC8320654/ /pubmed/34284643 http://dx.doi.org/10.2217/nmt-2021-0004 Text en © 2021 Future Medicine Ltd https://creativecommons.org/licenses/by/4.0/This work is licensed under the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/)
spellingShingle Preliminary Communication
Edgar, Suzanna
Abdul-Aziz, Nur Adilah
Loh, Ee Chin
Capelle, David
Goh, Khean-Jin
Latif, Lydia Abdul
Shahrizaila, Nortina
Ahmad-Annuar, Azlina
A survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia
title A survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia
title_full A survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia
title_fullStr A survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia
title_full_unstemmed A survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia
title_short A survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia
title_sort survey on patients' disease perception and the impact of the covid-19 pandemic on persons living with amyotrophic lateral sclerosis in malaysia
topic Preliminary Communication
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8320654/
https://www.ncbi.nlm.nih.gov/pubmed/34284643
http://dx.doi.org/10.2217/nmt-2021-0004
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