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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Detalles Bibliográficos
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
Descripción
Sumario: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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