Patient-Driven Referral in a Free Tertiary Hospital: An Indicator of Trust and Engagement in Improving Cardiac Care

Background: Congenital heart disease (CHD) accounts for ~28% of all congenital anomalies, affecting ~1.35 million newborns annually, including ~0.24 million in India. Although >90% of affected children can achieve healthy adulthood with timely intervention, delayed referrals and weak referral systems contribute to preventable morbidity. In a setting where treatment is free, understanding how patients navigate referral pathways is essential. This study evaluates referral dynamics to a free tertiary cardiac centre in India, focusing on the contribution of former patients and families in facilitating new CHD referrals.

Methods: A retrospective analysis was conducted on CHD patients referred since 2018 and treated between 2023 and 2025, excluding re-interventions. CHD phenotypes were classified using the International Classification of Diseases—10th Revision. Socio-demographic and clinical variables were recorded in REDCap. Referral pathways were categorized as former patient-driven, peer-driven, healthcare-professional, social media, staff-mediated, and local walk-ins. Descriptive and comparative statistics were performed in SPSS v26.0.

Results: Among 4,743 interventions, referral information was available for 3,960 patients. Median age at treatment was 4 years (IQR: 591-2,816 days), with a male-to-female ratio of 1.38:1. Patient-driven referrals were predominant (41.1%), surpassing healthcare-professional (38.3%) and peer-driven referrals (12.6%). Social media, staff-mediated, and walk-in referrals constituted 6.1%, 1.5%, and 0.4%, respectively. Spatial mapping showed that 86.7% of patient-driven referrals originated from home or neighbouring states. Children aged > 5 years were about 61% more likely to be referred through former patients as compared to other modes (38.1% vs. 27.7%, p < 0.001). Patient-driven referrals remained stable across pre-COVID-19, COVID-19, and post-COVID-19 periods (42.6%, 40.4%, 41.1%; p = 0.26), reflecting sustained trust and engagement of patients and families in facilitating cardiac care.

Conclusion: Patient-driven referrals consistently outperformed other pathways, demonstrating strong community trust and family engagement. Former patients serve as vital ambassadors, strengthening access to timely CHD care in a free tertiary cardiac care setting.