Identifying Vulnerability in Adults With Congenital Heart Disease: A Mixed-Methods Examination of Psychosocial Experiences.

backgroundWith increased survival into adulthood, psychosocial research in adults with congenital heart disease (ACHD) has become increasingly important. However, existing studies often rely on isolated quantitative metrics or small qualitative samples, limiting insight into patients' lived experiences and potential variation across demographic subgroups. To address this gap, this mixed-methods study integrated quantitative survey data with qualitative thematic analysis to characterize psychosocial experiences among ACHD and examine differences by disease complexity, sex, and age.

methodsA national online survey was conducted among Dutch ACHD (≥ 16 years) recruited via the national patient association (Oct-Dec 2024). The survey formed part of a broader psychosocial and sexual health questionnaire. For the present analysis, items on demographic characteristics and psychosocial experiences were used. Closed-ended responses were analyzed descriptively, and open-ended responses were analyzed using inductive thematic analysis.

resultsA total of 259 participants responded (68.8% female; 47.1% aged 26-40). Disease complexity was severe in 38.6%, moderate in 47.6%, and mild in 13.8%. Nearly all participants (94.1%) reported at least one psychosocial concern, most related to physical endurance (64.7%), reproduction (64.0%), and visible scarring (47.8%), alongside frequent social concerns such as difficulty keeping up with peers (53.7%), relationship challenges (47.8%), fear of rejection (39.0%), and worries about others' judgement (38.2%). Difficulties were more common among females and those with more complex CHD. A developmental pattern emerged, with physical and social insecurities arising in childhood and adolescence, and reproductive and employment-related concerns emerging in young adulthood. Although many insecurities stemmed from earlier experiences, participants described effective coping strategies and positive meaning-making.

conclusionsDespite considerable resilience, psychosocial difficulties in ACHD are heterogenous and present across all patient groups, with certain subgroups showing heightened vulnerability. Identifying these patients and understanding the origins of their concerns is essential for timely support. Moreover, early onset and age-specific patterns emphasize the need for joint involvement of pediatric and adult cardiologists in recognizing psychosocial concerns and ensuring continuity during transition, as these experiences may shape long-term psychosocial trajectories.