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川崎病阿拉伯倡议(Kawarabi):一项多中心调查的建立和结果。

Kawasaki Disease Arab Initiative [Kawarabi]: Establishment and Results of a Multicenter Survey.

机构信息

University of Sherbrooke, Sherbrooke, QC, Canada.

Department of Pediatrics, Albert Einstein College of Medicine, Children's Hospital at Montefiore, 3415 Bainbridge Ave, Bronx, NY, 10467, USA.

出版信息

Pediatr Cardiol. 2022 Aug;43(6):1239-1246. doi: 10.1007/s00246-022-02844-w. Epub 2022 May 27.

DOI:10.1007/s00246-022-02844-w
PMID:35624313
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9140321/
Abstract

Studies on Kawasaki disease (KD) in Arab countries are scarce, often providing incomplete data. This along with the benefits of multicenter research collaboratives led to the creation of the KD Arab Initiative [Kawarabi] consortium. An anonymous survey was completed among potential collaborative Arab medical institutions to assess burden of KD in those countries and resources available to physicians. An online 32-item survey was distributed to participating institutions after conducting face validity. One survey per institution was collected. Nineteen physicians from 12 countries completed the survey representing 19 out of 20 institutions (response rate of 95%). Fifteen (79%) institutions referred to the 2017 American Heart Association guidelines when managing a patient with KD. Intravenous immunoglobulin (IVIG) is not readily available at 2 institutions (11%) yet available in the country. In one center (5%), IVIG is imported on-demand. The knowledge and awareness among countries' general population was graded (0 to 10) at median/interquartiles (IQR) 3 (2-5) and at median/IQR 7 (6-8) in the medical community outside their institution. Practice variations in KD management and treatment across Arab countries require solid proactive collaboration. The low awareness and knowledge estimates about KD among the general population contrasted with a high level among the medical community. The Kawarabi collaborative will offer a platform to assess disease burden of KD, among Arab population, decrease practice variation and foster population-based knowledge.

摘要

阿拉伯国家对川崎病(KD)的研究很少,往往提供的数据不完整。这与多中心研究合作的好处相结合,促使成立了 KD 阿拉伯倡议 [Kawarabi] 联盟。一项针对潜在合作阿拉伯医疗机构的匿名调查评估了这些国家 KD 的负担以及医生可用的资源。在进行了面对面的有效性评估后,向参与机构分发了一份 32 项的在线调查。来自 12 个国家的 19 名医生完成了调查,代表了 20 个机构中的 19 个(响应率为 95%)。15 家(79%)机构在管理 KD 患者时参考了 2017 年美国心脏协会指南。有 2 家(11%)机构没有随时提供静脉注射免疫球蛋白(IVIG),但在国内可以提供。在一个中心(5%),IVIG 是按需进口的。各国普通民众的知识和意识评分(0 到 10)中位数/四分位数(IQR)为 3(2-5),机构外医疗界的中位数/IQR 为 7(6-8)。阿拉伯国家 KD 管理和治疗方面的实践差异需要积极主动的合作。普通民众对 KD 的低认识和知识估计与医疗界的高认识形成鲜明对比。Kawarabi 合作将提供一个平台,评估阿拉伯人口中 KD 的疾病负担,减少实践差异,并促进基于人群的知识。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/21f0/9140321/e0d92dc0b498/246_2022_2844_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/21f0/9140321/cf0f3ce8cc9f/246_2022_2844_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/21f0/9140321/1a1122a06a4c/246_2022_2844_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/21f0/9140321/e0d92dc0b498/246_2022_2844_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/21f0/9140321/cf0f3ce8cc9f/246_2022_2844_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/21f0/9140321/1a1122a06a4c/246_2022_2844_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/21f0/9140321/e0d92dc0b498/246_2022_2844_Fig3_HTML.jpg

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