Back to Journals » Open Access Rheumatology: Research and Reviews » Volume 10

Impact of systemic juvenile idiopathic arthritis/Still’s disease on adolescents as evidenced through social media posts

Authors Modica RF, Lomax KG, Batzel P, Cassanas A

Received 8 February 2018

Accepted for publication 29 March 2018

Published 13 June 2018 Volume 2018:10 Pages 73—81

DOI https://doi.org/10.2147/OARRR.S165010

Checked for plagiarism Yes

Review by Single-blind

Peer reviewers approved by Dr Colin Mak

Peer reviewer comments 2

Editor who approved publication: Professor Chuan-Ju Liu

Renee F Modica,1 Kathleen G Lomax,2 Pamela Batzel,3 Armelle Cassanas3

1Department of Pediatrics, University of Florida, Gainesville, FL, USA; 2Immunology, Hepatology and Dermatology Medical Affairs, Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA; 3Treato, Princeton, NJ, USA

Purpose: To understand the experience of adolescent systemic juvenile idiopathic arthritis (SJIA) patients and those of their parents based on their social media posts.
Methods: English language posts related to SJIA, Still’s disease, or juvenile arthritis were collected and analyzed.
Results: In total, 71 posts created between 2009 and 2015 on 15 websites were identified in November 2015. Of the 32 unique authors, 17 were SJIA patients aged 13–20 years (40 posts), 7 were mothers of SJIA patients (12 posts), and 8 patients had unspecified forms of juvenile arthritis (19 posts). Many patients posted about similar diagnostic experiences marked by 5 phases: 1) early prediagnosis: pain and fatigue overlooked until crisis occurred, 2) first misdiagnosis: doctors talked about “growing pains” and psychosocial problems (“fake pains” to avoid school), 3) second misdiagnosis: severity acknowledged, but diagnosed as leukemia or another cancer, 4) tests: tests leading to diagnosis and treatment conducted, and 5) cognitive identity: patient accepted the diagnosis and its implications. Many adolescent patients, looking back at disease onset in their childhood, described themselves as a “sleeping child” rather than the typical active child. Several patients tried to hide their illness from friends, but expressed concerns openly online. Many patients described SJIA as a powerful external enemy, using terms like “bulldozer,” “dragon,” and “monster.” Many posts from patients and their mothers used superhero language/imagery to help “fight” SJIA. Some patients also posted about the risk of death.
Conclusion: Although most adolescent SJIA patients openly posted about the difficulties of their disease online, they made efforts to hide their disease in the real world. They frequently used superhero words and images in describing their fight for better health. Physicians can use these insights when counseling SJIA patients to provide a narrative that meshes with the patients’ worldview and perhaps to improve physician–patient communication to increase treatment adherence.

Keywords: adolescents, juvenile arthritis, SJIA, social media, Still’s disease, superheroes

Creative Commons License This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution - Non Commercial (unported, v3.0) License. By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms.

Download Article [PDF]