Open AccessA survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia
Author(s) -
Suzanna Edgar,
Nur Adilah Abdul-Aziz,
Ee Chin Loh,
David Paul Capelle,
KimLeng Goh,
Lydia Abdul Latif,
Nortina Shahrizaila,
Azlina AhmadAnnuar
Publication year - 2021
Publication title -
neurodegenerative disease management
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.674
H-Index - 23
eISSN - 1758-2032
pISSN - 1758-2024
DOI - 10.2217/nmt-2021-0004
Subject(s) - amyotrophic lateral sclerosis , pandemic , medicine , covid-19 , perception , disease , rehabilitation , physical therapy , family medicine , psychology , infectious disease (medical specialty) , pathology , neuroscience
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.