Cardiac rehabilitation in adults with congenital heart disease: care situation, barriers, and patient-reported outcomes

AIMS: Cardiac rehabilitation (CR) is an essential component of long-term care for adults with congenital heart disease (ACHD). This study provides novel patient-reported data on barriers to cardiac rehabilitation in ACHD, a population that has so far been insufficiently studied in this respect. The objective was to investigate knowledge, sources of information, barriers to access, and expectations regarding CR in ACHD and to analyse age-specific and sex-specific differences. METHODS AND RESULTS: A pragmatic cross-sectional survey was conducted between January and November 2025 as part of routine follow-up visits in the ACHD outpatient clinic. A total of 402 ACHD were included. After plausibility checks, 345 participants were analysed (49.9% women; mean age 40.7 years in both groups). The severity of the congenital heart defect was predominantly subjectively rated as moderate to severe. Self-rated general health decreased significantly with increasing age. Only 24.2% actively searched for information about CR and reported poorer health status compared with those who did not search. The main information sources were the internet and interpersonal contacts. Women more frequently used self-help groups and peer support services. Regardless of active information seeking, about one quarter reported having been informed about rehabilitation options by physicians. Social services were used less frequently but rated particularly helpful. The majority preferred receiving information during personal physician consultations (86.3%). Women additionally more often preferred brochures and telephone counselling, while younger participants more often preferred digital formats. ACHD-specific CR programmes were known to only 32.8%. Procedural knowledge gaps were pronounced. Only 31.5% knew how to apply for CR, and the process was predominantly perceived as difficult. Overall, 34.4% had already participated in rehabilitation programmes. Older participants participated more frequently but also reported more frequent application rejections. Family obligations prevented participation in 9.8% and were significantly more common among women. Psychological barriers were reported by 14.6%. Expectations regarding rehabilitation were high. More than 90% expected physical improvement, and 61.2% expected psychological stabilization, with women significantly more often rating psychological support as very important. CONCLUSION: Despite high expectations, the utilization of CR among ACHD remains low. Substantial knowledge and procedural deficits as well as age-specific and sex-specific barriers indicate the need for multimodal, target group-specific information strategies; structured referral processes; low-threshold support in the application and access process; and strong integration of psychosocial components.