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设立儿童风湿病国际意识日:首届世界青年风湿病日(WORD)2019 年的思考。

Establishing an international awareness day for paediatric rheumatic diseases: reflections from the inaugural World Young Rheumatic Diseases (WORD) Day 2019.

机构信息

Alder Hey Children's NHS Foundation Trust, Liverpool Health Partners UK, Liverpool, UK.

Paediatric Rheumatology European Society, Geneva, Switzerland.

出版信息

Pediatr Rheumatol Online J. 2020 Sep 11;18(1):71. doi: 10.1186/s12969-020-00465-2.

DOI:10.1186/s12969-020-00465-2
PMID:32917217
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7488434/
Abstract

There is a lack of awareness of paediatric rheumatic diseases (PRDs), among the public, and certain groups of healthcare professionals (HCPs), including general practitioners. To help improve international awareness and understanding of PRDs, World yOung Rheumatic Diseases (WORD) Day was established on 18 March 2019. Its aim was to raise awareness of PRDs and the importance of timely referral plus early diagnosis and access to appropriate treatment and support. A steering committee was established, and an external agency provided digital support. A social media campaign was launched in December 2018 to promote it, and analytics were used to measure its impact. Face-to-face and virtual events took place globally on or around WORD Day 2019, with 34 countries reporting events. Examples included lectures, social gatherings and media appearances. A total of 2585 and 660 individuals followed the official Facebook and Twitter accounts respectively, up until WORD Day. The official #WORDDay2019 hashtag was seen by 533,955 unique accounts on 18 March 2019 alone, with 3.3 million impressions. WORD Day 2019 was the first international campaign focused solely on PRDs. It demonstrated that despite awareness events being often resource-light, they can be implemented across a range of diverse settings. WORD Day has now become an annual global awareness event, facilitated by a growing network of patient, parent and professional community supporters.

摘要

公众和某些医疗保健专业人员(包括全科医生)对儿科风湿病(PRD)认识不足。为了帮助提高国际社会对 PRD 的认识和理解,2019 年 3 月 18 日设立了世界青年风湿病日(WORD)。其目的是提高对 PRD 的认识以及及时转诊、早期诊断以及获得适当治疗和支持的重要性。成立了一个指导委员会,并由一个外部机构提供数字支持。2018 年 12 月发起了一场社交媒体宣传活动来推广它,并使用分析来衡量其影响。2019 年 WORD 日当天或前后,在全球范围内举行了面对面和虚拟活动,有 34 个国家报告了活动。活动形式包括讲座、社交聚会和媒体露面等。在 WORD 日之前,分别有 2585 人和 660 人关注了官方的 Facebook 和 Twitter 账户。仅在 2019 年 3 月 18 日一天,官方#WORDDay2019 标签就被 533955 个独特的账户看到,有 330 万次展示。2019 年 WORD 日是第一个专门针对 PRD 的国际宣传活动。它表明,尽管宣传活动通常资源较少,但它们可以在各种不同的环境中实施。现在,WORD 日已经成为一个年度的全球宣传活动,由越来越多的患者、家长和专业社区支持者组成的网络提供便利。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/eb18/7488434/ba3d571c636d/12969_2020_465_Fig4_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/eb18/7488434/a01d90c904c4/12969_2020_465_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/eb18/7488434/8abded93befc/12969_2020_465_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/eb18/7488434/b33f32e08178/12969_2020_465_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/eb18/7488434/ba3d571c636d/12969_2020_465_Fig4_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/eb18/7488434/a01d90c904c4/12969_2020_465_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/eb18/7488434/8abded93befc/12969_2020_465_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/eb18/7488434/b33f32e08178/12969_2020_465_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/eb18/7488434/ba3d571c636d/12969_2020_465_Fig4_HTML.jpg

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