ArticleOpen access rheumatology : research and reviews2018
Impact of systemic juvenile idiopathic arthritis/Still's disease on adolescents as evidenced through social media posts.
Article in Open access rheumatology : research and reviews, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
5 citing papers in PubMed, 1 synthesis or guideline pooled it, 10 citations in OpenAlex.
- Adolescents' experiences of fluctuating pain in musculoskeletal disorders: a qualitative systematic review and thematic synthesis.BMC musculoskeletal disorders · 2020Pooled it
- A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments.The Cochrane database of systematic reviews · 2023Review
- Participation in everyday life for young people with chronic pain in Saudi Arabia: "you feel lacking in life and you feel that time is flying by".Frontiers in rehabilitation sciences · 2023Article
- An Economic Comparison of Treatment Strategies with Anakinra in Systemic Juvenile Idiopathic Arthritis (sJIA).Open access rheumatology : research and reviews · 2021Article
- Tweets by People With Arthritis During the COVID-19 Pandemic: Content and Sentiment Analysis.Journal of medical Internet research · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeTo understand the experience of adolescent systemic juvenile idiopathic arthritis (SJIA) patients and those of their parents based on their social media posts.
methodsEnglish language posts related to SJIA, Still's disease, or juvenile arthritis were collected and analyzed.
resultsIn 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.
conclusionAlthough 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.