Evidence map›Paper›PMID 42441308›Full record

ArticleRheumatology advances in practice2026

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 and 2 more

Abstract read
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In one paragraph

Article in Rheumatology advances in practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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2 · The registry

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

12 authors.

Polly LivermoreInfection, Immunity and Inflammation Research and Teaching Department, UCL Great Ormond Street Institute of Child Health, London, UK.ORCID https://orcid.org/0000-0003-0824-3878
Klaudia H KupiecInfection, Immunity and Inflammation Research and Teaching Department, UCL Great Ormond Street Institute of Child Health, London, UK.
Kathleen MulliganSchool of Health and Medical Sciences, Department of Health Services Research and Management, City St George's, University of London, London, UK.ORCID https://orcid.org/0000-0002-6003-3029
Shashi P HiraniDepartment of Global, Public and Population Health and Policy, School of Health and Medical Sciences, City St George's, University of London, London, UK.
Faith GibsonCentre for Outcomes and Experience Research in Children's Health, Illness and Disability, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Claire DeakinInfection, Immunity and Inflammation Research and Teaching Department, UCL Great Ormond Street Institute of Child Health, London, UK.ORCID https://orcid.org/0000-0002-7044-5801
Deborah RidoutPopulation, Policy & Practice Department, UCL Great Ormond Street Institute of Child Health, London, UK.
Andrea M KnightThe Hospital for Sick Children, Department of Paediatrics, University of Toronto, Toronto, Ontario, Canada.ORCID https://orcid.org/0000-0003-4278-9049
Lucy R WedderburnInfection, Immunity and Inflammation Research and Teaching Department, UCL Great Ormond Street Institute of Child Health, London, UK.ORCID https://orcid.org/0000-0002-7495-1429
Brian M FeldmanThe Hospital for Sick Children, Department of Paediatrics, University of Toronto, Toronto, Ontario, Canada.ORCID https://orcid.org/0000-0002-7813-9665
Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDCBS)
Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDCBS)

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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 in depression and anxiety. Methods: CYP ages ≥8 years who were enrolled in the UK-wide JDM cohort and Biomarker Study (JDCBS) in 15 UK National Health Service 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 the HRQoL in CYP with JDM is affected 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.

Indexed as

anxietychildhood chronic conditionsdepressionillness burdenpaediatric rheumatologyquality of lifeuncertainty

Identifiers

PMID42441308
PMCPMC13335649

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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.