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    Please use this identifier to cite or link to this item: https://ir.csmu.edu.tw:8080/ir/handle/310902500/23379


    Title: Clinical spectrum and the comorbidities of Dravet syndrome in Taiwan and the possible molecular mechanisms
    Authors: Huang, CH;Hung, PL;Fan, PC;Lin, KL;Hsu, TR;Chou, IJ;Ho, CS;Chou, IC;Lin, WS;Lee, IC;Fan, HC;Chen, SJ;Liang, JS;Tu, YF;Chang, TM;Hu, SC;Wong, LC;Hung, KL;Lee, WT
    Date: 2021
    Issue Date: 2022-08-05T09:36:19Z (UTC)
    Publisher: NATURE PORTFOLIO
    ISSN: 2045-2322
    Abstract: Dravet syndrome (DS) is an uncommon epilepsy syndrome that may negatively affect the patients and their caregivers. However, reliable and valid measures of its impact on caregivers and the characteristics of patients with DS in Taiwan are lacking. This study aimed to describe the characteristics of patients with DS and concerns of their caregivers and establish a baseline frequency of disease characteristics using a cross-sectional survey in Taiwan. We assessed the caregivers of patients with DS using an online anonymous questionnaire. The seizure frequency decreased with age, although lacking statistical significance. Vaccines show no influence on the condition of patients with DS. Our findings revealed the highest impact on the domains affecting the caregivers' daily life, including additional household tasks, symptom observation, further medical plan, and financial issues. Caregivers also expressed concerns regarding the lack of independence/constant care, seizure control, speech/communication, and impacts on siblings because of long-term care of the patients in parents' absence. Our findings highlight the significant effects of caring for a child with DS on the lives of their caregivers in Taiwan; these findings will help raise awareness regarding the needs of these families. Furthermore, we discussed the possible pathophysiological mechanisms of associated comorbidities.
    URI: http://dx.doi.org/10.1038/s41598-021-98517-4
    https://www.webofscience.com/wos/woscc/full-record/WOS:000706830500059
    https://ir.csmu.edu.tw:8080/handle/310902500/23379
    Relation: SCIENTIFIC REPORTS ,2021,v11,issue 1
    Appears in Collections:[中山醫學大學研究成果] 期刊論文

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