Quality of Life in Adults with Congenital Heart Disease: Insights from a Tertiary Centre

Objective: As the survival of individuals born with congenital heart disease (CHD) improves into adulthood, the focus has shifted from traditional clinical outcomes to patient-reported outcome measures that better reflect the impact of the disease on daily life. Our aim was to assess the quality of life (QoL) of adult patients with congenital heart disease (ACHD) followed in a tertiary centre and to evaluate the parameters that influence QoL in this population. Methods: This cross-sectional observational study included patients followed up at the national referral ACHD centre between April and September 2022. Sociodemographic and clinical data were collected from medical records and self-report questionnaires. Quality of life (QoL) was assessed using the validated Short Form–36 (SF-36) and Euro Quality of Life–5 Dimension (EQ-5D) questionnaires, including the EQ Visual Analogue Scale (VAS). Results: A total of 123 ACHD patients were included (median age 34 (29–41) years; 43.9% male). Most participants had moderate CHD (61%), and 14.6% were cyanotic. Overall, SF-36 Physical Component Summary scores were higher than Mental Component Summary scores. Almost half of the patients (48.8%) reported no problems in all five domains of the EQ-5D, with most problems reported in anxiety/depression domain. Patients with severe CHD, cyanosis, or HF reported lower QoL scores across multiple SF-36 domains, particularly general health, role–physical, and physical functioning domains. Conclusions: QoL among ACHD patients in our cohort was generally high in most domains as assessed by the SF-36 and EQ-5D. Patients with HF reported lower QoL scores, emphasizing the importance of close clinical follow-up and the need for tailored QoL assessment tools for this complex population.