# Long-Term Outcomes of Patients with Digestive Tract Congenital Anomalies and Their Caregivers in Uganda: A Cohort Study

## TL;DR

This study in Uganda examines the long-term outcomes of children with digestive tract birth defects and finds a high risk of mortality and the need for better community healthcare.

## Contribution

The study provides the first long-term outcomes data for Ugandan children with digestive tract congenital anomalies.

## Key findings

- 73.2% of children with DTCAs survived after hospital discharge.
- Children with DTCAs had a 2.70 times higher mortality risk compared to others.
- Mortality was linked to diagnosis type, presence of a stoma, and higher household income.

## Abstract

In Uganda, long-term outcomes remain unknown for children living with digestive tract congenital anomalies (DTCA) after corrective surgery or hospitalization. This cohort study set in a tertiary hospital in Uganda investigated the long-term outcomes of children with DTCAs. Caregivers with deceased children completed a verbal autopsy, while those with live children completed a PedsQL quality of life (QoL) survey. Multivariate Cox proportional hazard regression and linear regression explored factors associated with death and quality of life, respectively. Of the 362 participating caregivers, 265 (73.2%) had a child with a DTCA who survived since hospital discharge. The median age and follow-up time were 3.2 years. The mortality hazard ratio for children with DTCAs was 2.70 (95% confidence interval 2.21-3.30). Mortality was associated with DTCA diagnosis, the presence of stoma, and higher household income. Our findings support the urgent need for outpatient community healthcare services specific to DTCA patients to counteract these consequences.