A Survey On patients’ Disease Perception and the Impact of the COVID-19 Pandemic On Persons Living With Amyotrophic Lateral Sclerosis in Malaysia

Abstract

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.

Keywords:

• ALS
• COVID-19
• disease management
• Malaysia
• motor neurone disease
• survey

Supplementary data

To view the supplementary data that accompany this paper please visit the journal website at:www.tandfonline.com/doi/full/10.2217/nmt-2021-0004

Author contributions

N Shahrizaila and A Ahmad-Annuar contributed to the study conception and design. Data collection and analysis were performed by S Edgar and NA Abdul-Aziz. Neurologist KJ Goh and palliative medicine consultants D Capelle, EC Loh and LA Latif provided feedback to further refine the questionnaire. The first draft of the manuscript was written by S Edgar which was critically reviewed by N Shahrizaila, A Ahmad-Annuar, D Capelle, EC Loh and LA Latif. Funding for the study was acquired by N Shahrizaila. All the authors have read and approved the final manuscript.

Acknowledgments

The authors extend their deep gratitude to our patients and their caregivers for participating in the survey.

Financial & competing interests disclosure

N Shahrizaila receives funding support from the Malaysian Ministry of Education Fundamental Research Grant Scheme (FRGS/1/2018/SKK08/UM/01/1), Amyotrophic Lateral Sclerosis Association (IF008-2019) and Sydney Southeast Asia Center (IF012-2019). The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Ethical conduct of research

The authors state that this study was approved by the University Malaya Medical Centre (UMMC) Medical Research Ethics Committee. In addition, prior written informed consent was obtained from all patients participating in the survey.