A test of a conceptual model of uncertainty, benefit and burden in children and young people with juvenile dermatomyositis

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ID: 317005
2026
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Abstract
Abstract Objectives Mental health concerns are highly prevalent in children and young people (CYP) with chronic conditions. This is further exacerbated by perceived feelings of illness uncertainty and illness burden which have negative implications for CYP with childhood-onset chronic conditions and their families. Understanding the mechanisms that reduce health-related quality of life (HRQoL) and identifying resilience factors is important to improve outcomes for these vulnerable populations. The current study aimed to assess HRQoL in CYP with Juvenile Dermatomyositis (JDM), and to test a new conceptual model of illness representations and resilience on depression and anxiety. Methods CYP aged 8 and over who were enrolled into the UK wide JDM cohort and Biomarker Study (JDCBS) in 15 UK NHS tertiary paediatric rheumatology services were invited to complete five validated paediatric measures: PedsQL 4.0 Core, PedsQL 3.0 Rheumatology Module, Paediatric Index of Emotional Distress (PI-ED), Childhood Uncertainty in Illness Scale (CUIS) and Benefit and Burden Scale for Children (BBSC). Data were analysed using descriptive statistics and structural equation modelling. Results Results showed that CYP with JDM are affected in their HRQoL as a result of their chronic condition. Moreover, the proposed model revealed that illness uncertainty and burden are key driving factors that cause an increase in anxiety and depression, while benefit finding did not ameliorate poor mental health outcomes. Conclusion Addressing illness uncertainty and reducing the perceived disease burden is vital to improve HRQoL and well-being in CYP with JDM who struggle to cope with the unpredictable nature of their disease.
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Authors 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, Juvenile Dermatomyositis Cohort Biomarker Study & Repository (Jdcbs), Kate Armon, Louise Coke, Julie Cook, Amy Nichols, Vanja Briggs, Emily Tropman, Liza McCann, Ian Roberts, Eileen Baildam, Louise Hanna, Olivia Lloyd, Susan Wadeson, Michelle Andrews, Jane Roach, Beverley Almeida, Phil Riley, Ann McGovern, Verna Cuthbert, Precious Iheke, Clive Ryder, J Scott, Beverley Thomas, Taunton Southwood, Eslam Al-Abadi, Ruth Howman, Sue Wyatt, Gillian Jackson, Mark Wood, Tania Amin, Vanessa VanRooyen, Deborah Burton, Louise Turner, Heather Rostron, Sarah Hanson, Joyce Davidson, Janet Gardner‐Medwin, Neil Martin, Sue Ferguson, Liz Waxman, Michael Browne, Roisin Boyle, Emily Blyth, Susanne Cathcart, Kirsty McLellan, Jaclyn Keightley, Mark Friswell, Helen Foster, Alison Swift, Sharmila Jandial, V. Stevenson, Debbie Wade, Ethan Sen, Eve Smith, Lisa Qiao, Stuart Watson, Claire Duong, Stephen Crulley, Andrew Davies, Caroline Miller, L. Bell, Flora McErlane, Sunil Sampath, Josh Bennet, Sharon King, Christopher Long, Lesley Brindley, Helen Venning, Rangaraj Satyapal, Elizabeth Stretton, Mary Jordan, Ellen Mosley, Anna Frost, Lindsay Crate, Kishore Warrier, Stefanie Stafford, Brogan Wrest, Chia-Ping Chou, Paul Pryce, Lucy Wedderburn, Clarissa Pilkington, Nathan Hasson, Muthana Al-Obadi, Giulia Varnier, Sandrine Lacassagne, Sue Maillard, Lauren Stone, Elizabeth Halkon, Virginia Brown
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Journal Rheumatology Advances in Practice
Year 2026
DOI
10.1093/rap/rkag070
URL
https://doi.org/10.1093/rap/rkag070
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