A survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia
Document Type
Article
Publication Date
8-1-2021
Abstract
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.
Keywords
ALS, COVID-19, Disease management, Malaysia, Motor neurone disease, Survey
Divisions
fac_med
Funders
Malaysian Ministry of Education Fundamental Research Grant Scheme[FRGS/1/2018/SKK08/UM/01/1],Amyotrophic Lateral Sclerosis Association[IF008-2019],Sydney Southeast Asia Center[IF012-2019]
Publication Title
Neurodegenerative Disease Management
Volume
11
Issue
04
Publisher
Future Medicine Ltd