Chronic conditions and adolescents’ psychosocial wellbeing: the impact of self-reporting

This study explores psychosocial wellbeing in adolescents with a physician-diagnosed chronic condition, with emphasis on the disparity between adolescents who self-report their condition (reporters) and those who do not (non-reporters). We also investigated whether these differences varied across disease groups and whether sex, age, and socioeconomic status (SES) moderated associations. This cross-sectional study included participants from the Dutch PROactive cohort aged 12-18 years with a clinical diagnosis of chronic disease: auto-immune disease, cystic fibrosis, congenital heart disease, nephrological condition, or a general pediatric condition. Psychosocial wellbeing was assessed using self-reported indicators of life satisfaction, self-rated health, psychosomatic symptoms, pediatric quality of life, anxiety, and depression. We examined differences in psychosocial wellbeing among reporters and non-reporters, both at a group level and within distinct disease categories. Potential moderating effects of age, sex, and SES on the association between reporting status and psychosocial wellbeing outcomes were assessed. Of the 1009 adolescents (mean age 15.4 ± 1.6 years; 67.4% girls) 26.8% self-reported having a chronic condition. Reporters consistently indicated worse psychosocial wellbeing across all assessed sub-domains. When stratified for disease, this pattern was not always replicated; similar deficits in wellbeing were only observed for the populations with an autoimmune disease or a general pediatric condition. No clear moderating effects were found for sex, age, and SES on the association between self-reporting of chronic disease and psychosocial wellbeing. Conclusions: Only a minority of adolescents with a physician-diagnosed chronic condition self-report as having a chronic disease. Adolescents with a self-reported chronic condition indicated a lower psychosocial wellbeing, a pattern that seems to hold across some, but not all, disease groups. What is Known: • Adolescents with chronic conditions are at increased risk of poorer psychosocial wellbeing, particularly girls, older youth, and those with lower SES. While one in four has a physician-diagnosed condition, far fewer self-identify, likely reflecting factors such as disease knowledge, burden, visibility, acceptance, and stigma. How psychosocial wellbeing differs between reporters and non-reporters remains unclear. What is New: • Among adolescents with physician-diagnosed chronic conditions, only a minority self-report as having a chronic disease. Those who do self-report consistently indicate lower psychosocial wellbeing, a pattern which seems to hold in some, but not all, studied disease groups.