Çocuk Sağlığı ve Hastalıkları Dergisi 2021 , Vol 64 , Num 1-2
Visibility of rare diseases and neonatal screening programme on social media
Selda Fatma Bülbül *1 ,Cansu Çelik *2 ,Aliye Gülbahçe *3
1 Kırıkkale Üniversitesi Tıp Fakültesi, Pediatri Profesörü, Kırıkkale
2 Kırıkkale Üniversitesi Tıp Fakültesi, Pediatri Araştırma Görevlisi, Kırıkkale
3 Kırıkkale Üniversitesi Tıp Fakültesi, Pediatri Uzmanı, Kırıkkale
Bülbül SF, Çelik C, Gülbahçe A. (Department of Pediatrics, Kırıkkale University Faculty of Medicine, Kırıkkale, Turkey). Visibility of rare diseases and neonatal screening programme on social media. Çocuk Sağlığı ve Hastalıkları Dergisi 2021; 64: 5-9.

It is evident that rare metabolic diseases, the life-saving national newborn screening, can benefit from sharing information on social media platforms and we cannot ignore the contribution of raising awareness about this issue. In this study, we planned to reveal the visibility and current situation of the rare disease and newborn screening program on social media. Accounts that share on child health and diseases in Instagram were found by using hashtags and by scanning similar account suggestions. From 76891 posts, the posts that giving information about inherited metabolic diseases and newborn screening were selected. The inclusion rates of these posts in accounts in the study, were calculated and included in the statistics. 75 Instagram pages with more than 1000 followers have been reviewed. The average number of posts per page is 743.8 (22-11349) and the number of posts related to inherited metabolic diseases and national newborn screening is 4.4 (0-203) and 0.53 (0-7), respectively. The ratio of the posts associated with inherited metabolic diseases to all posts is 433/76891 (0.005) and the ratio of those related to newborn heel blood screening is 53/76891 (0.00068). As a result of our study, it can be seen that both the inherited metabolic diseases and the heel blood screening may find itself very limited place in social media platforms that share about child health. Anahtar Kelimeler : social media, heel prick test, neonatal screening

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