Congenital heart disease patients' and parents' perception of disease‐specific knowledge: Health and impairments in everyday life

Background Children and adolescents with congenital heart disease (CHD) and their families require qualified combined medical and psychosocial information, care, and counseling. This study aimed to analyze CHD patients' and parents' perception of disease‐specific knowledge, state of health, and impairments experienced in everyday life, as well as factors influencing these perceptions. Materials and Methods Analyses were based on a survey among patients/parents recruited via the German National Register for Congenital Heart Defects (NRCHD). The total sample (N = 818) was divided into four groups: “Children” (176 patients), “Adolescents” (142 patients), “Adults” (269 patients), and “Parents” (231 parents). The patients were stratified into those with simple and those with complex CHD. Descriptive and univariate analyses were performed. Results Patients' age and CHD severity were related to self‐assessed state of health (P = .04 and P = .02). In addition, CHD severity was associated with worse impairment in everyday life (P