Paul C. Helm1, Sebastian Kempert2, Marc-André Körten1, Wiebke Lesch3, Katharina Specht3, Ulrike M. M. Bauer1,3
Congenital Heart Disease, Vol.13, No.3, pp. 377-383, 2018, DOI:10.1111/chd.12581
Abstract 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… More >
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