Establishing an international awareness day for paediatric rheumatic diseases: reflections from the inaugural World Youn
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COMMENTARY
Open Access
Establishing an international awareness day for paediatric rheumatic diseases: reflections from the inaugural World Young Rheumatic Diseases (WORD) Day 2019 Eve M. D. Smith1,2,3, Sammy Ainsworth4,5, Michael W. Beresford1,2,3,5, Veerle Buys4,6,7, Wendy Costello4,8, Yona Egert4,9, Helen E. Foster10,11,12, Lovro Lamot2,13,14, Berent J. Prakken2,15, Christiaan Scott11,16 and Simon R. Stones4,17,18*
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. Keywords: Awareness, Campaign, Paediatric rheumatic diseases, WORD Day
Background and purpose Paediatric rheumatic diseases (PRDs) encompass a spectrum of conditions and affect children and young people (CYP) in many ways at a crucial time in their lives. The twenty-first century has seen the emergence of highly effective treatments [1], an increasing evidence base and greater understanding of diseases [2]. However, * Correspondence: [email protected] 4 European Network for Children with Arthritis, Geneva, Switzerland 17 School of Healthcare, University of Leeds, Leeds, UK Full list of author information is available at the end of the article
delays in diagnosis and access to appropriate care remain serious issues [3] and are reported around the world [4–6]. The reasons for the delay are multifactorial and include lack of awareness, referral pathways, cultural factors, geographical factors and inadequate capacity of the workforce. There is a lack of awareness amongst members of the public, and certain groups of healthcare professionals, including in particular general practitioners [7] and other primary healthcare providers such as nurses and physiotherapi
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