Project : Feasibility of Primary Repair for Anorectal Malformations in Uganda
Study period 2021-2022
Background Surgically correctable congenital anomalies account for an increasing burden of death and disability for children in low- and middle-income countries (LMIC).
In our setting, most patients with ARMs undergo three separate staged operations: 1) initial colostomy formation; 2) repair of the ARM (called anoplasty), and 3) colostomy closure. Three operations result in a long treatment duration, potential complications with each procedure, delays in care, and stigma associated with ostomies. We have previously demonstrated that children live 2-3 years on average with their ostomies, and that over a third of families experience catastrophic health expenditure. Half of male caregivers leave the family and children are not allowed to attend school with an ostomy. An intervention that shortens duration of life with an ostomy would reduce the financial burden, social rejection, and school attendance. In higher-income countries, some children receive a single operation or a 2-stage procedure. Safety of a 1- or 2-stage procedure in Uganda is unknown, due to the different resources available, and associated social and economic impact for families is also unknown. My specific aims are designed to address these important gaps in knowledge.
Significance
By offering 1- or 2- stage procedures for ARMs in a resource-limited setting, we expect to reduce health care expenditure by families, length of treatment, length of hospital stay, frequency of hospital visits, and social rejection. The results could also have a broad impact on improving the standard of pediatric surgical care in LMICs like Uganda by demonstrating that a single stage repair is feasible in a resource-limited setting, and offering guidelines such as the ARM score that may be used in similar settings.
Objectives
1: To determine the effectiveness and complications of 1- and 2- stage repair for ARMs.
2: To develop an ARM score to guide decision-making for need of staged procedures with an ostomy, rather than primary anoplasty.
3: To assess the financial and social impact of reducing or eliminating time living with an ostomy for children with ARMs.
Study site: Mbarara Regional Referral/Teaching hospital
Mentors Professor Doruk. Ozgediz and Dr. Olivia Kituuka, Dr. Martin Situma, and Dr. Francis Bajunirwe
Principal Investigator Felix Oyania
Study sponsor The National Institute of Diabetes and Digestive and Kidney Diseases and the Fogarty International Center of the National Institutes of Health (NIH) under Award Number D43TW009343 and the University of California Global Health Institute (UCGHI).
