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

被引：3

作者：

Edgar, Suzanna ^{[1
,2
]}

Abdul-Aziz, Nur Adilah ^{[1
]}

Loh, Ee Chin ^{[1
]}

Capelle, David ^{[1
]}

Goh, Khean-Jin ^{[1
]}

Latif, Lydia Abdul ^{[3
]}

Shahrizaila, Nortina ^{[1
]}

Ahmad-Annuar, Azlina ^{[2
]}

机构：

[1] Univ Malaya, Fac Med, Dept Med, Kuala Lumpur 50603, Malaysia

[2] Univ Malaya, Fac Med, Dept Biomed Sci, Kuala Lumpur 50603, Malaysia

[3] Univ Malaya, Fac Med, Dept Rehabil Med, Kuala Lumpur 50603, Malaysia

来源：

NEURODEGENERATIVE DISEASE MANAGEMENT | 2021年 / 11卷 / 04期

关键词：

ALS; COVID-19; disease management; Malaysia; motor neurone disease; survey; FAMILY CAREGIVERS; MANAGEMENT; DIAGNOSIS; DEMENTIA; CARE; ALS;

D O I：

10.2217/nmt-2021-0004

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

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.

引用

页码：307 / 314

页数：8

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