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Participants aged 16 years or older completed SF-36, HAQ, and a questionnaire on disease features, medications, education, and employment; intensity indices were derived from longitudinal trajectories. Returned questionnaires revealed persistent active disease, ongoing immunosuppression, and notable impacts on employment and living situation, with correlations between SF-36 and MMT8 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Pediatric Rheumatology (2022) 20:102 [https://doi.org/10.1186/s12969-022-00754-y](https://doi.org/10.1186/s12969-022-00754-y)  \nRESEARCH ARTICLE Open Access  \nJuvenile Dermatomyositis: what comes next? Long-term outcomes in childhood myositis from a patient perspective  \nC. Boros 1^, L. McCann2, S. Simou3, D. Cancemi3, N. Ambrose4, C. A. Pilkington5, M. Cortina‑Borja6, L. R Wedderburn3,7* and on behalf of the JDM Cohort and Biomarker Study (JDCBS)3  \nAbstract  \nBackground: To describe long‑term outcomes in JDM using patient questionnaires and link to longitudinal, pro‑ spectively collected data for each patient within the Juvenile Dermatomyositis Cohort and Biomarker Study, UK and Ireland (JDCBS) to determine outcome predictors.  \nMethods: JDCBS participants aged ≥ 16y completed the SF36, HAQ and a questionnaire regarding current disease features, medications, education and employment. Data collected from the JDCBS included disease subtype, demo‑ graphics, clinical and laboratory features. Intensity indices were calculated for physician VAS, modified skin DAS, CMASand MMT8 by dividing area under the curve (AUC) from longitudinal score trajectories by duration of study follow‑up (y) . Relationships between questionnaire and JDCBS clinical / laboratory data were investigated fitting statistical mod‑ els appropriate for cross sectional and longitudinal data.  \nResults: Of 190 questionnaires sent, 84 (44%) were returned. Average age of respondents was 20.6 years (SD 3 . 9), time since diagnosis was 12.4 years (SD 5 . 0), age at onset was 9.2 years (SD 4 . 3), female to male ratio 4 . 25:1 . Forty‑nine (59%) self‑reported persistently active disease, 54 (65%) were still taking immunosuppressive medication. 14/32 at school/higher education reported myositis adversely affecting academic results. 18–24 year‑olds were twice as likely to be unemployed compared the UK population (OR =0.456, 95% CI 0 . 24, 0 . 84, p=0. 001) . Participants ≥ 18 years were three times as likely to be living with a parent/guardian (OR = 3. 39, p \u003C 0. 001) . SF36 MCS and MMT8 intensity index scores were significantly correlated (ρ = 0. 328, p= 0. 007) .  \nConclusions: After 12.4 years, questionnaire responders reported self‑perceived high rates of persistently active disease and medication use, reduced rates of employment and were more likely to live with a parent/guardian. Per‑ ceived persistently active muscle disease appeared to affect quality of life in these patients and was the most signifi‑ cant contributor to long‑term outcomes. Our findings highlight the importance of including the patient perspective in the assessment of long term outcomes, so that that we can start to target initial management strategies more effectively based on a combination of clinical and patient‑reported data.  \nKeywords: Juvenile, Myositis dermatomyositis, Outcome, Adolescent, Young adult  \n\n| Christina Boros deceased. |\n| --- |\n| *Correspondence: [l.wedderburn@ucl.ac.uk](l.wedderburn@ucl.ac.uk) |\n\n3 Infection, Immunity and Inflammation Teaching and Research Department, UCL GOS Institute of Child Health, 30 Guilford Street, London WC1N 1EH, UK Full list of author information is available at the end of the article  \nBackground  \nChildhood idiopathic inflammatory myopathies (IIM) are rare disorders, with an annual incidence of 1.9–4.0 million children per year [1] . Answering questions from parents and patients regarding long-term outcomes  \n© The Author(s) 2022. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit ","cbCaikWZB5TiQQjG","https://ap.wps.com/l/cbCaikWZB5TiQQjG","pdf",1217588,"English","# Abstract\n## Background\n## Methods\n## Results\n## Conclusions\n## Keywords","[{\"question\":\"What was the study’s main objective for juvenile dermatomyositis outcomes?\",\"answer\":\"To describe long-term outcomes in JDM using patient questionnaires and to link those responses with longitudinal, prospectively collected JDCBS data in order to determine outcome predictors.\"},{\"question\":\"How were patient-reported outcomes and disease information collected?\",\"answer\":\"JDCBS participants aged 16 years and older completed SF-36, HAQ, and a questionnaire covering current disease features, medications, education, and employment, which were then related to clinical and laboratory data.\"},{\"question\":\"What key findings were reported after about 12.4 years?\",\"answer\":\"Questionnaire responders reported high rates of persistently active disease and medication use, reduced employment rates, and were more likely to live with a parent or guardian.\"}]","Juvenile Dermatomyositis: what comes next? Long-term outcomes in childhood myositis from a patient perspective | PDF",1790965321,25]