A test of a conceptual model of uncertainty, benefit and burden in children and young people with juvenile dermatomyositis
Polly Livermore, Klaudia H Kupiec, Kathleen Mulligan, Shashi P Hirani, Faith Gibson, Claire Deakin, Deborah Ridout, Andrea M Knight, Lucy R Wedderburn, Brian M Feldman, the Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDCBS) · 2026
Read A test of a conceptual model of uncertainty, benefit and burden in children and young people with juvenile dermatomyositis by Polly Livermore, Klaudia H Kupiec, Kathleen Mulligan, Shashi P Hirani, Faith Gibson, Claire Deakin, Deborah Ridout, Andrea M Knight, Lucy R Wedderburn, Brian M Feldman, the Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDCBS) (2026) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/PMC13335649.txt.
Description
Polly Livermore and co-authors tested a conceptual model of illness uncertainty, benefit, and burden in young people with juvenile dermatomyositis in a 2026 UK study. Mental health problems are common in children with chronic conditions, and this rare muscle disease brings its own unpredictability.
Children and young people aged 8 and over were recruited from a UK-wide cohort and biomarker study spanning 15 NHS tertiary pediatric rheumatology services. They completed five validated measures covering quality of life, emotional distress, illness uncertainty, and perceived benefit and burden. The analysis assessed health-related quality of life and tested whether the new model explains depression and anxiety in this group, including which resilience factors protect them. The work aims to show clinicians where support can lift daily life for these families.
Catalog record
| CREATOR | Polly Livermore, Klaudia H Kupiec, Kathleen Mulligan, Shashi P Hirani, Faith Gibson, Claire Deakin, Deborah Ridout, Andrea M Knight, Lucy R Wedderburn, Brian M Feldman, the Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDCBS) |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 46918 |
| LICENSE | https://creativecommons.org/licenses/by/4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |