Abstract
Background: The improved survival of patients with congenital heart disease (CHD) mandates a shift in focus towards an understanding of patient perspectives on outcomes, particularly focused on quality of life (QOL). This study represents the first systematic, prospective, comprehensive, patient-reported outcome measure (PROM) based QOL assessment of adult congenital heart disease (ACHD) patients in India.
Methods: PROM data from the Indian cohort of APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease – International Study) I (2014) and II (2022)—prospective, cross-sectional international studies conducted at two major centers—were collated. PROMs that were recorded included the determinants of QOL, including physical component summary (PCS) and mental component summary (MCS) of the 12-item health survey, EQ VAS (EuroQoL Visual Analogue Scale), as well as the linear analog scale for assessing QOL (LAS-QOL). The influence of demographic and medical factors on PROMs and various aspects of QOL was assessed with multiple linear regression using the Wilson and Cleary model and generalized estimating equations.
Results: The number of patients studied was 325 (26.71 ± 8.66 years, 56.3% males). More than half had college education, 32.4% had a full-time job, and 26.5% had a partner. Defect complexity was simple in 29.9%, moderate in 37.5%, great in 41.5%, and 77.5% had undergone at least one procedure as part of their treatment. Overall, PROMs from India—particularly the physical domain—fared worse than the global data. Nevertheless, there was improvement from 2014 to 2022. Positive predictors of PROMs included self-reported NYHA (New York Heart Association) class, male sex, younger age, education, and center/year of study. Women reported significantly worse PROMs.
Conclusion: ACHD patients from India report overall excellent PROMs including QOL, despite the majority having complex heart defects. Physical functioning is a key deficiency. Age- and gender-sensitive health policies, systematic early implementation of personalized physical activity training programs, and integration of mental health into cardiac follow-up merit strong consideration.