Population-based Care for Congenital Heart Disease through the Hridyam Program: Accomplishments and Challenges

What is so unique about Hridyam?

Hridyam is perhaps the first example of a public health approach directed towards the management of comprehensive CHD with a view to reducing their impact on infant mortality.

Focus on infants and neonates. While there are examples of programs that provide treatment for heart defects, they are largely focused on school-age children and are therefore unlikely to have an impact on IMR. Hridyam is unique because it seeks to systematically identify and manage babies with critical CHD and thereby directly impact IMR.

Attention to the care continuum-grass-roots approach. Hridyam seeks to strengthen health systems to enable improvement in services at every stage of the care continuum of CHD, from screening of heart defects at birth, stabilization and transport, provision of care including surgery or intervention, and follow-up care.

Robust IT platform. The web-based platform created for Hridyam allows easy referral of babies with CHD, posting of expert opinions, and scheduling of procedures across the state. By ensuring data is captured across every stage of the journey of a child with CHD, it is possible to build in considerable transparency into the system that ultimately works as a registry.

What has been accomplished through Hridyam?

State-wide network. An extensive state-wide network has been established to support the care of babies with CHD. This system seamlessly integrates primary care services with tertiary care centres that provide comprehensive paediatric care services.

CHD mortality reduction and IMR reduction. One of the main reasons for introducing the program was to reduce infant mortality in the state to <10, i.e. single digits. This goal has been accomplished. The latest numbers, as published in the sample registration system bulletin of the Government of India, reveal an IMR of 5 for the state of Kerala.⁵ Fig. 1 shows IMR trends for the state of Kerala over the past 3 decades.

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FIG 1.

Infant mortality rate (IMR) trend in Kerala from 1999 to 2023

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Capacity building. Over 1000 nurses have been trained for early detection. Additionally, several health workers and primary care providers have been sensitised towards the importance of early CHD detection, and there has been extensive education of paediatricians on early detection, stabilization, transport, and referral of critical CHD. Many obstetricians and radiologists have been thoroughly sensitized regarding prenatal diagnosis of CHD.

Awareness. Awareness within the health sector and among the general public on CHD is unprecedented. This has greatly enabled early diagnosis and timely referral of many babies with critical CHD.

What enabled the program’s initial success? How were initial challenges overcome?

Hridyam was built upon a well-functioning public healthcare model that has existed in the state for the past several decades. Hridyam served to unify all the care providers of CHD from both the government and private sectors and motivated them to ensure the success of the mission. The healthcare fraternity of Kerala took pride in being a part of the mission.⁴

Additionally, the program was established and sustained in its initial stages because of exceptional leadership that paid close attention to all the early challenges and fixed all the bugs in the system. The team members involved in implementing Hridyam were singularly motivated and dedicated to the overarching goal of ensuring the best possible care for every baby with CHD.

Minute attention to the care continuum for individual cases, especially infants and neonates with critical CHD, frequent review meetings of team members, and close attention to training at all levels helped keep the program focused on saving the lives of the most vulnerable.⁶

Current and future challenges

Some of the important challenges that threaten sustainability in Hridyam have been identified and summarized in a recent publication.⁷

Newborn CHD screening (pulse oximetry and predischarge physical examination) is largely limited to public hospitals as per the government mandate. There is potential for unscreened cases to slip through the cracks, particularly because over two-thirds of deliveries in Kerala happen in the private sector.

Lack of an underlying legislative foundation for Hridyam has left it vulnerable to shifting government priorities, which threaten its viability. The absence of ownership or decision-making authority of the participating hospitals has been a major threat to sustainability. Many private hospitals have found it challenging to perform surgeries at the reimbursement rates provided by the government, with no revisions for the past 15 years, and have therefore withdrawn from Hridyam. Delayed reimbursement of care providers and vendors has also been a threat to sustainability.

Public sector hospitals have not been able to expand their capacity sufficiently so far. The absence of a system for internal audits impedes the sustained delivery of quality care throughout the care continuum, particularly at the stage of surgery.

Avoiding dilution of the core focus on saving the lives of the most vulnerable infants and newborns with CHD has also been a challenge. A number of patients with relatively benign CHD requiring catheter interventions are also included under Hridyam. Examples include catheter closure of relatively minor lesions, such as small VSD procedures. Similarly, there is a challenge of excluding expensive operations with a relatively unfavourable risk–benefit ratio (e.g. palliation of hypoplastic left heart syndrome).

Beyond survival, it is critical to focus on long-term outcomes through periodic assessments that should include neurodevelopment evaluations. Parent and patient advocacy should also be included in the program planning as essential foundations for lifelong care.

Scaling up Hridyam

There are not many states in India that have the solid foundation in primary healthcare that Kerala has. Therefore, currently, only selected Indian states are in a position to replicate this experience in the immediate future. However, with changing demographics, the relative importance of CHD is only likely to grow in the coming years. Therefore, it may be appropriate for selected states to invest in CHD care for the future. States that have achieved IMR under 20 with regional capacity to operate on CHD and established newborn and paediatric critical care facilities are ideally positioned for a systematic population-based CHD program.

Conclusion

Notwithstanding the challenges and shortcomings, Hridyam is a unique model for the delivery of advanced speciality services at the population level that has demonstrated effectiveness in impacting major health indices. This model has potential applications for other conditions and in other jurisdictions with suitable adaptations.