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

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...

Descripción completa

Guardado en:
Detalles Bibliográficos
Autores principales: Modica RF, Lomax KG, Batzel P, Cassanas A
Formato: article
Lenguaje:EN
Publicado: Dove Medical Press 2018
Materias:
Acceso en línea:https://doaj.org/article/e51d544eefc54473a068b6a9de5b0c86
Etiquetas: Agregar Etiqueta
Sin Etiquetas, Sea el primero en etiquetar este registro!
id oai:doaj.org-article:e51d544eefc54473a068b6a9de5b0c86
record_format dspace
spelling oai:doaj.org-article:e51d544eefc54473a068b6a9de5b0c862021-12-02T08:15:26ZImpact of systemic juvenile idiopathic arthritis/Still’s disease on adolescents as evidenced through social media posts1179-156Xhttps://doaj.org/article/e51d544eefc54473a068b6a9de5b0c862018-06-01T00:00:00Zhttps://www.dovepress.com/impact-of-systemic-juvenile-idiopathic-arthritis-stills-disease-on-ado-peer-reviewed-article-OARRRhttps://doaj.org/toc/1179-156XRenee 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, superheroesModica RFLomax KGBatzel PCassanas ADove Medical PressarticleAdolescentsjuvenile arthritisSJIAsocial mediaStill’s diseasesuperheroesDiseases of the musculoskeletal systemRC925-935ENOpen Access Rheumatology: Research and Reviews, Vol Volume 10, Pp 73-81 (2018)
institution DOAJ
collection DOAJ
language EN
topic Adolescents
juvenile arthritis
SJIA
social media
Still’s disease
superheroes
Diseases of the musculoskeletal system
RC925-935
spellingShingle Adolescents
juvenile arthritis
SJIA
social media
Still’s disease
superheroes
Diseases of the musculoskeletal system
RC925-935
Modica RF
Lomax KG
Batzel P
Cassanas A
Impact of systemic juvenile idiopathic arthritis/Still’s disease on adolescents as evidenced through social media posts
description 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
format article
author Modica RF
Lomax KG
Batzel P
Cassanas A
author_facet Modica RF
Lomax KG
Batzel P
Cassanas A
author_sort Modica RF
title Impact of systemic juvenile idiopathic arthritis/Still’s disease on adolescents as evidenced through social media posts
title_short Impact of systemic juvenile idiopathic arthritis/Still’s disease on adolescents as evidenced through social media posts
title_full Impact of systemic juvenile idiopathic arthritis/Still’s disease on adolescents as evidenced through social media posts
title_fullStr Impact of systemic juvenile idiopathic arthritis/Still’s disease on adolescents as evidenced through social media posts
title_full_unstemmed Impact of systemic juvenile idiopathic arthritis/Still’s disease on adolescents as evidenced through social media posts
title_sort impact of systemic juvenile idiopathic arthritis/still’s disease on adolescents as evidenced through social media posts
publisher Dove Medical Press
publishDate 2018
url https://doaj.org/article/e51d544eefc54473a068b6a9de5b0c86
work_keys_str_mv AT modicarf impactofsystemicjuvenileidiopathicarthritisstillrsquosdiseaseonadolescentsasevidencedthroughsocialmediaposts
AT lomaxkg impactofsystemicjuvenileidiopathicarthritisstillrsquosdiseaseonadolescentsasevidencedthroughsocialmediaposts
AT batzelp impactofsystemicjuvenileidiopathicarthritisstillrsquosdiseaseonadolescentsasevidencedthroughsocialmediaposts
AT cassanasa impactofsystemicjuvenileidiopathicarthritisstillrsquosdiseaseonadolescentsasevidencedthroughsocialmediaposts
_version_ 1718398634378133504