ArticlePediatric rheumatology online journal2019
Being on the juvenile dermatomyositis rollercoaster: a qualitative study.
Article in Pediatric rheumatology online journal, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
What it found
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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.
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Who cites it
20 citing papers in PubMed, 39 citations in OpenAlex.
- Comorbidities in Juvenile-Onset Rheumatic Diseases: A Systematic Review and Meta-Analysis.Children (Basel, Switzerland) · 2026Review
- A test of a conceptual model of uncertainty, benefit and burden in children and young people with juvenile dermatomyositis.Rheumatology advances in practice · 2026Article
- CAR T cell therapy for children with rheumatic disease: the time is now.Nature reviews. Rheumatology · 2025Review
- Involving young people in research investigating comorbidity associated with childhood-onset rheumatic disease: perspectives of a series of focus groups.BMC rheumatology · 2025Article
- Psychometric properties of patient-reported outcomes measurement information system (PROMIS) fixed short forms in Juvenile Myositis.Seminars in arthritis and rheumatism · 2025Article
- Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview study.Pediatric rheumatology online journal · 2025Article
- Cutaneous Manifestations in Patients with Dermatomyositis, Are They Only Skin Deep?Dermatology and therapy · 2024Article
- Undercover lung damage in pediatrics - a hot spot in morbidity caused by collagenoses.Frontiers in immunology · 2024Review
- 'The current mental health status of children and young people with JIA, and their wider family': a charity partner collaboration survey.Pediatric rheumatology online journal · 2023Article
- Juvenile idiopathic inflammatory myositis: an update on pathophysiology and clinical care.Nature reviews. Rheumatology · 2023Review
- Well-being in chronic pediatric inflammatory rheumatic diseases: the experience of a French healthcare network.Orphanet journal of rare diseases · 2023Article
- Comparison of Patient-Reported Outcomes Measurement Information System Computerized Adaptive Testing Versus Fixed Short Forms in Juvenile Myositis.Arthritis care & research · 2023Article
- Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition.Patient preference and adherence · 2023Article
- Juvenile Dermatomyositis: what comes next? Long-term outcomes in childhood myositis from a patient perspective.Pediatric rheumatology online journal · 2022Article
- The importance of children and young person involvement in scoping the need for a paediatric glucocorticoid-associated patient reported outcome measure.BMC rheumatology · 2022Article
- Identification and prediction of novel classes of long-term disease trajectories for patients with juvenile dermatomyositis using growth mixture models.Rheumatology (Oxford, England) · 2021Article
- I don't want to think about it: a qualitative study of children (6-18 years) with rheumatic diseases and parents' experiences with regular needle injections at home.Pediatric rheumatology online journal · 2021Article
- Parent Perspectives on Addressing Emotional Health for Children and Young Adults With Juvenile Myositis.Arthritis care & research · 2021Article
- Mapping the current psychology provision for children and young people with juvenile dermatomyositis.Rheumatology advances in practice · 2021Article
- A survey to understand the feelings towards and impact of COVID-19 on the households of juvenile dermato myositis patients from a parent or carer perspective.Rheumatology advances in practice · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 5 institutions in 3 countries.
Funding
Abstract
backgroundJuvenile Dermatomyositis is a rare, potentially life-threatening condition with no known cure. There is no published literature capturing how children and young people feel about their condition, from their perspective. This study was therefore unique in that it asked children and young people what is it like to live with Juvenile Dermatomyositis.
methodsData were obtained from fifteen young people with Juvenile Dermatomyositis, between eight and nineteen years of age from one Paediatric Rheumatology department using audio-recorded interpretive phenomenology interviews. Data were analyzed phenomenologically, using a process that derives narratives from transcripts resulting in a collective composite of participants shared experiences, called a 'phenomenon'.
resultsThe overarching metaphor of a rollercoaster captures the phenomenon of living with Juvenile Dermatomyositis as a young person, with the ups and downs at different time points clearly described by those interviewed. The five themes plotted on the rollercoaster, began with confusion; followed by feeling different, being sick, steroidal and scared from the medications; uncertainty; and then ended with acceptance of the disease over time.
conclusionYoung people were able to talk about their experiences about having Juvenile Dermatomyositis. Our findings will aid clinicians in their practice by gaining a deeper understanding of what daily life is like and highlighting ways to enhance psychosocial functioning. Hopefully, this study and any further resulting studies, will raise understanding of Juvenile Dermatomyositis worldwide and will encourage health care professionals to better assess psychosocial needs in the future.
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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.