Fear of Disease Progression Among Parents of Children With Juvenile Idiopathic Arthritis or Type 1 Diabetes

By
Bethany Richmond
Louise Sharpe
Ruth Colagiuri
Jemma Todd
October 9, 2026

Bmj Paediatrics Open

Overview

In a cross-sectional study of 124 parents of children and adolescents with juvenile idiopathic arthritis (JIA) or type 1 diabetes mellitus (T1DM), elevated fear of disease progression (FoP) was identified in 76% of parents. Higher FoP was associated with less favourable parent- and youth-reported psychosocial outcomes, and explained an additional 1.6% of variance in parent-reported youth health-related quality of life after covariate adjustment.

Background

JIA and T1DM are chronic childhood conditions with physical and psychosocial effects, and parents commonly take responsibility for disease management while experiencing related stress. FoP has been studied extensively in cancer and has also been reported in people with non-cancer chronic illnesses and caregivers. Before this study, it was unclear whether parents of children with chronic non-cancer conditions experienced fear about their child’s disease progression. The study examined this question in families affected by JIA or T1DM.

Data Highlights

Measure	Finding
Study design	Cross-sectional study
Participants	124 parents of youth aged 2–18 years; mean youth age 11.36 years (SD 3.90)
Condition groups	57 parents of youth with JIA; 67 parents of youth with T1DM
Parent participants	107 mothers and 17 fathers
Elevated parental FoP	76% of parents in secondary exploratory analyses
Additional variance in parent-reported youth HRQoL	1.6% accounted for by parental FoP after covariate adjustment

Key Findings

Parents were recruited through social media and patient organisation groups and completed online questionnaires.
Higher parental FoP was associated with less favourable psychosocial outcomes for parents and youth, based on parent reports.
After covariate adjustment, parental FoP accounted for an additional 1.6% of variance in parent-reported youth health-related quality of life.
Exploratory analyses found elevated FoP in 76% of participating parents.
The study authors concluded that future research should examine how to understand and treat FoP among parents of children with chronic conditions.
The article’s practice and policy section identifies improved screening and support for parents’ concerns about disease progression as an area of need.

Clinical Implications

The article identifies screening and support for parental concerns about disease progression as relevant areas for practice and policy. The findings are cross-sectional and based on parent reports; the authors call for further investigation into how parental FoP can be understood and treated.

Conclusion

In this sample, parental FoP was prevalent among families affected by JIA or T1DM and was associated with less favourable psychosocial outcomes. Further research is needed to clarify how this concern can be assessed and addressed.