Understanding the Challenge of Complex Congenital Heart Palliation Follow-Up in a Middle-Income Latin American Country

Introduction. Congenital heart disease of great complexity like single ventricle are the most prevalent congenital defects, managing these requires multiple surgical procedures, usually three stages. Lethality during the interstage period has decreased due to practices as home monitoring. Given the significant resources invested in patient care, it is essential to improve long-term outcomes. There is limited research in cardiovascular disease within middle-income countries. Objective. To identify factors associated with lack of medical follow-up and lethality in children during first interstage period. Method. A retrospective cohort study was conducted including 173 children in their first interstage period after cardiovascular surgery for severe congenital heart disease. Reviewed clinical records and contacted caregivers through telephone/instant messaging software. Analysis included central tendency and dispersion measures. Associations between independent variables and the primary outcomes —loss to follow-up (LTF) and mortality during the interstage period— were evaluated using the Mann-Whitney, Chi-square or Fisher's exact tests. Results. Of 173 patients, 65 (37.6%) patients LTF. The risk factors for LTF: rural residence (OR=5.05, CI95%1.32-19.26), lower educational level of parents. Global lethality was 13.3% (CI95%7.9-20.4) and factors associated were: rural origin (OR=22.78, CI95%3.68-140.83), malnutrition (OR=25.47, CI95%2.96-218.73), necrotizing enterocolitis (OR=13.34, CI95%2.34-75.97) and heterotaxia or situs inversus (OR=8.05, CI95%1.26-51.34). The number of visits were a protective factor for interstage lethality (OR=0.71, CI95%0.55-0.9). Conclusion. The interstage period entails significant challenges for patients and their families, which are possibly exacerbated by the socio-economic context of a middle-income country. Improving follow-up and support for caregivers of patients under similar conditions could help mitigate identified factors related to lethality.