A Population-Based Approach to Congenital Heart Disease in Kerala, India.

Abstract

Congenital heart disease (CHD) is a leading cause of infant mortality. Its treatment involves a complex "continuum of care" over time and distance, the equitable delivery of which is particularly challenging in low- and middle-income countries that lack infrastructure, a specialized workforce, or a coordinated patient throughput system. We report an update on the impact of a population-based program, Hridyam (established 2017), to address gaps and inequity in CHD care in Kerala, India. Hridyam is a real-time, open-entry virtual registration and care coordination system that tracks suspected and confirmed CHD cases through each step of the care continuum, with timelines and trip points to eliminate gaps in care delivery. It also implements statewide prenatal and neonatal screening for CHD. Between 2017 and 2024, there were 22 876 total registrations, of which 32.6% required a cardiac procedure. Through 2022, 61.8% of procedures occurred in infants, mostly younger than 30 days. Overall procedural mortality was 3.9%, and 30-day mortality was 1.9%. Comparing 2014-2016 (pre-Hridyam) with 2018-2020, in-hospital mortality for infant heart surgery at the largest referral institution declined significantly from 3.8% to 2.0%. Kerala's infant mortality declined from 12/1000 in 2016 to 6/1000 in 2022. However, new enrollments plateaued in 2023 and declined by 45% in 2024. A population-based approach to the recognition and treatment of CHD, using information technology and screening tools, improves access to care, eliminates inequities, and reduces overall infant mortality. However, challenges exist and are explored.