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...
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| Format: | Article |
| Language: | English |
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Dove Medical Press
2018-06-01
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| Series: | Open Access Rheumatology: Research and Reviews |
| Subjects: | |
| Online Access: | https://www.dovepress.com/impact-of-systemic-juvenile-idiopathic-arthritis-stills-disease-on-ado-peer-reviewed-article-OARRR |
| _version_ | 1818694948476682240 |
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| author | Modica RF Lomax KG Batzel P Cassanas A |
| author_facet | Modica RF Lomax KG Batzel P Cassanas A |
| author_sort | Modica RF |
| collection | DOAJ |
| 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 |
| first_indexed | 2024-12-17T13:37:41Z |
| format | Article |
| id | doaj.art-e51d544eefc54473a068b6a9de5b0c86 |
| institution | Directory Open Access Journal |
| issn | 1179-156X |
| language | English |
| last_indexed | 2024-12-17T13:37:41Z |
| publishDate | 2018-06-01 |
| publisher | Dove Medical Press |
| record_format | Article |
| series | Open Access Rheumatology: Research and Reviews |
| spelling | doaj.art-e51d544eefc54473a068b6a9de5b0c862022-12-21T21:46:24ZengDove Medical PressOpen Access Rheumatology: Research and Reviews1179-156X2018-06-01Volume 10738138813Impact of systemic juvenile idiopathic arthritis/Still’s disease on adolescents as evidenced through social media postsModica RFLomax KGBatzel PCassanas ARenee 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, superheroeshttps://www.dovepress.com/impact-of-systemic-juvenile-idiopathic-arthritis-stills-disease-on-ado-peer-reviewed-article-OARRRAdolescentsjuvenile arthritisSJIAsocial mediaStill’s diseasesuperheroes |
| spellingShingle | 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 Open Access Rheumatology: Research and Reviews Adolescents juvenile arthritis SJIA social media Still’s disease superheroes |
| title | 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_short | 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 rsquo s disease on adolescents as evidenced through social media posts |
| topic | Adolescents juvenile arthritis SJIA social media Still’s disease superheroes |
| url | https://www.dovepress.com/impact-of-systemic-juvenile-idiopathic-arthritis-stills-disease-on-ado-peer-reviewed-article-OARRR |
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