BUILDING LOCAL CAPACITY FOR BOWEL MANAGEMENT IN LOW RESOURCE SETTINGS: PROGRAM SUSTAINABILITY AND EXPANSION

Congenital colorectal conditions including anorectal malformations (ARM) and Hirschsprung's disease (HD) can cause chronic issues with constipation and incontinence leading to reduced quality of life. Bowel management programs (BMP) are critical to addressing these challenges. There is a paucity of literature on intermediate-term outcomes of BMPs for patients in low and middle-income countries (LMICs).

In June 2022, a BMP for patients with ARM or HD was initiated at a tertiary referral hospital in Mbarara, Uganda. Local staff were trained by visiting staff with experience in organized bowel management and collaboratively managed a pilot cohort. Patients began with a 2-week program with imaging, clean-out, titration of enema components by nursing staff, and family education. Caregivers completed forms at the start and end of the program and via phone call during periodic follow-ups. Local staff then continued to run the program and enroll additional patients. A Cochran Armitage test was performed to determine association between adherence to program and reduction in involuntary bowel movements (BM).

From June 2022-June 2025, 53 patients have enrolled in the BMP, including 12 patients in the pilot joint US-Ugandan led cohort. Intake forms were available for 44 patients. Median age at presentation was 3.5 years (IQR 2-5.5 years), 70% were male, and the most common diagnosis was ARM (43.2% ARM, 25% HD, 2.3% idiopathic constipation, 29.5% unknown). Around half of patients were reached on follow-up (n=28, 52%). Median number of days at final follow-up was 433.5 (IQR 390.5-694) with 2 (IQR 1-3.75) recorded follow-ups per patient. Overall, patients demonstrated an adherence rate of 74%. Adherence to the program was associated with greater reduction in both day (p=0.013) and night (p=0.012) involuntary BMs. Comparing the pilot and expansion cohorts, there was no difference in final regimen (pilot cohort: 75% enema, 16.7% laxatives, 8.33% discharged vs expansion cohort: 68.4% enema, 15.8% laxatives, 15.7% discharged; p=0.9) and soiling outcomes with sustained reduction in day and night BMs at 2 weeks and on final follow-up.

Patients had sustained decreased rates of incontinence and similar rates of voluntary BMs at intermediate term follow-up, compared to two weeks post-program enrollment. Patients enrolled and managed exclusively by the local Ugandan team had similar outcomes to the pilot cohort, indicating that short term targeted education and co-management of patients in LICs can successfully serve as the foundation for development of local capacity for bowel management programs.