Objective:

Assess the relevance and impact of parental fear of disease progression (FoP) among families of youth with juvenile idiopathic arthritis (JIA) or type 1 diabetes mellitus (T1DM).

Approach:

• Design and participants: Cross-sectional study of 124 parents of youth aged 2–18 years: 57 had JIA and 67 had T1DM. Participants were recruited through social media and patient organisation groups.
• Measures and analysis: Online questionnaires assessed parental FoP, parental responses to child symptoms, and parental psychopathology. Parents also reported youth pain, health-related quality of life (HRQoL), anxiety, and depressive symptoms. Researchers used bivariate correlations…

Key Findings:

• Higher parental FoP was associated with less favourable psychosocial outcomes for parents and youth, according to parent reports.
• After covariate adjustment, parental FoP accounted for an additional 1.6% of variance in parent-reported youth HRQoL.
• Exploratory analyses indicated elevated FoP in 76% of parents.

Interpretation:

The authors report that FoP was prevalent among parents of youth with JIA or T1DM and was associated with less favourable psychosocial outcomes, according to parent reports.

Limitations:

• The cross-sectional design does not establish the direction or causality of associations.
• Youth outcomes were reported by parents.
• Recruitment through social media and patient organisation groups may limit how representative the sample is.

Conclusion:

The authors call for future research to examine how parental FoP in childhood chronic conditions can be understood and treated.