BMJ paediatrics open · 2026
Parental fear of progression in juvenile idiopathic arthritis and type 1 diabetes.
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Richmond Bethany, Sharpe Louise, Colagiuri Ruth, Todd Jemma
Аннотация
BACKGROUND: This cross-sectional study examined the relevance and impact of fear of disease progression (FoP) to parents of youth with two common childhood chronic conditions—juvenile idiopathic arthritis (JIA) and type 1 diabetes mellitus (T1DM).
METHODS: 124 parents (57 JIA, 67 T1DM; 107 mothers, 17 fathers) of youth aged 2–18 years (M=11.36, SD=3.90) were recruited through social media and patient organisation groups. Parents completed online questionnaires assessing fear of their child’s disease progression (FoP), responses to their children's symptoms and their own psychopathology. In addition, we measured parent reports of their child’s pain, health-related quality of life (HRQoL), anxiety and depressive symptoms. Bivariate correlations were used to assess the associations between parental FoP and parent and parent-reported youth psychosocial outcomes. A hierarchical regression was conducted to identify the unique contribution of parental FoP to youth HRQoL. Secondary exploratory analyses estimated the proportion of parents with elevated levels of FoP.
RESULTS: Parental FoP was associated with poorer parent and parent-reported youth psychosocial outcomes. After controlling for covariates, parental FoP explained a small amount of additional variance (1.6%) in parent-reported youth HRQoL. Secondary analyses revealed that 76% of parents had elevated levels of FoP.
CONCLUSIONS: As FoP appears to be a common concern among parents of youth with JIA and T1DM, which is consistently associated with poorer psychosocial outcomes, future research should be directed towards understanding and treating FoP in parents of children with a chronic condition.
METHODS: 124 parents (57 JIA, 67 T1DM; 107 mothers, 17 fathers) of youth aged 2–18 years (M=11.36, SD=3.90) were recruited through social media and patient organisation groups. Parents completed online questionnaires assessing fear of their child’s disease progression (FoP), responses to their children's symptoms and their own psychopathology. In addition, we measured parent reports of their child’s pain, health-related quality of life (HRQoL), anxiety and depressive symptoms. Bivariate correlations were used to assess the associations between parental FoP and parent and parent-reported youth psychosocial outcomes. A hierarchical regression was conducted to identify the unique contribution of parental FoP to youth HRQoL. Secondary exploratory analyses estimated the proportion of parents with elevated levels of FoP.
RESULTS: Parental FoP was associated with poorer parent and parent-reported youth psychosocial outcomes. After controlling for covariates, parental FoP explained a small amount of additional variance (1.6%) in parent-reported youth HRQoL. Secondary analyses revealed that 76% of parents had elevated levels of FoP.
CONCLUSIONS: As FoP appears to be a common concern among parents of youth with JIA and T1DM, which is consistently associated with poorer psychosocial outcomes, future research should be directed towards understanding and treating FoP in parents of children with a chronic condition.