Suzanna Edgar, Nur Adilah Abdul-Aziz, Ee Chin Loh, David Capelle, Khean-Jin Goh, Lydia Abdul Latif, Nortina Shahrizaila, Azlina Ahmad-Annuar
{"title":"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","authors":"Suzanna Edgar, Nur Adilah Abdul-Aziz, Ee Chin Loh, David Capelle, Khean-Jin Goh, Lydia Abdul Latif, Nortina Shahrizaila, Azlina Ahmad-Annuar","doi":"10.2217/nmt-2021-0004","DOIUrl":null,"url":null,"abstract":"<p><p><b>Aim:</b> 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. <b>Patients & methods:</b> An online survey comprising 42 questions was conducted on ALS patients during the peak of the COVID-19 pandemic. <b>Results:</b> 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. <b>Conclusion:</b> 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.</p>","PeriodicalId":19114,"journal":{"name":"Neurodegenerative disease management","volume":"11 4","pages":"307-314"},"PeriodicalIF":2.3000,"publicationDate":"2021-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8320654/pdf/","citationCount":"3","resultStr":"{\"title\":\"A survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia.\",\"authors\":\"Suzanna Edgar, Nur Adilah Abdul-Aziz, Ee Chin Loh, David Capelle, Khean-Jin Goh, Lydia Abdul Latif, Nortina Shahrizaila, Azlina Ahmad-Annuar\",\"doi\":\"10.2217/nmt-2021-0004\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p><b>Aim:</b> 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. <b>Patients & methods:</b> An online survey comprising 42 questions was conducted on ALS patients during the peak of the COVID-19 pandemic. <b>Results:</b> 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. <b>Conclusion:</b> 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.</p>\",\"PeriodicalId\":19114,\"journal\":{\"name\":\"Neurodegenerative disease management\",\"volume\":\"11 4\",\"pages\":\"307-314\"},\"PeriodicalIF\":2.3000,\"publicationDate\":\"2021-08-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8320654/pdf/\",\"citationCount\":\"3\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Neurodegenerative disease management\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.2217/nmt-2021-0004\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2021/7/21 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q3\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Neurodegenerative disease management","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.2217/nmt-2021-0004","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2021/7/21 0:00:00","PubModel":"Epub","JCR":"Q3","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
A survey on patients' disease perception and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis in Malaysia.
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.