Aims: The present study investigated quality of life (QOL) in a large cohort of German adults with congenital heart disease (ACHD) in association with sociodemographic and clinical variables.

Methods and Results: Patient reported outcome measures on demographic and clinical variables were retrospectively analysed in a representative sample of 4,015 adults with various forms of CHD (41.8 ± 17.2 years; 46.5% female). QOL was assessed using the EQ-5D-5L. Associations of QOL with patient reported clinical and sociodemographic variables were quantified using multiple regression analysis and multiple ordinal logit models. Overall, ACHD patients reported a good QOL comparable to German population norms. The most frequently reported complaints occurred in the dimensions pain/discomfort and anxiety/depression. QOL differed significantly within ACHD subgroups, with patients affected by pre-tricuspid shunt lesions indicating the most significant impairments. Older age, female sex, medication intake and the presence of comorbidities, were associated with significant reductions in QOL. CHD severity was positively associated with QOL.

Conclusion: In general, ACHD patients experience good QOL. However, specific subgroups may require additional support to cope with disease-related challenges. The negative correlation of QOL with age is especially alarming as the population of ACHD is expected to grow older in the future.