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

IF 2.3 Q3 CLINICAL NEUROLOGY Neurodegenerative disease management Pub Date : 2021-08-01 Epub Date: 2021-07-21 DOI:10.2217/nmt-2021-0004

Suzanna Edgar, Nur Adilah Abdul-Aziz, Ee Chin Loh, David Capelle, Khean-Jin Goh, Lydia Abdul Latif, Nortina Shahrizaila, Azlina Ahmad-Annuar

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引用次数: 3

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.

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马来西亚肌萎缩性侧索硬化症患者疾病认知及新冠肺炎疫情对患者影响调查

目的:了解马来西亚肌萎缩性侧索硬化症(ALS)患者对疾病的认知、管理以及2019冠状病毒病大流行对ALS患者的影响。患者和方法:在COVID-19大流行高峰期对ALS患者进行了一项包含42个问题的在线调查。结果:60名ALS患者中有37名(62%)直接或通过他们的照顾者回复。在2019冠状病毒病大流行期间，三分之二的患者受到医院预约、康复疗程突然中断和社交活动减少的负面影响。结论:这项研究提供了洞察患者的看法，他们的护理和管理的ALS在马来西亚，这将有助于实施变化，可以改善护理的人生活与这种毁灭性的疾病。

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来源期刊

Neurodegenerative disease management CLINICAL NEUROLOGY-

CiteScore

4.30

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0.00%

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