Delays in Care for Children With Low Anorectal Malformations in Southwestern Uganda

Abstract

Introduction: Disparities in anorectal malformation (ARM) outcomes between high- and low-income countries may be due to delayed diagnosis in the latter setting. The Three Delays model, comprising delays in seeking, accessing, and receiving care, provides a framework for exploring these challenges. We sought to examine the frequency and nature of the preoperative delays in children presenting for surgical correction of low ARMs. Methods: We conducted a cross-sectional study examining the delays in care among children with low ARMs in Southwestern Uganda between June 2021 and July 2023. Delayed diagnosis was defined as a diagnosis made >48 h of life. Potential associated factors such as caregiver, community, and aspect of health-care system factors were examined. Statistical significance was set at P < 0.05. Results: A total of 80 patients were included in the study. The median age at diagnosis was 29.2 d. In 82% of patients, the parents diagnosed the abnormality and 74% experienced delayed diagnosis. Among delays in seeking care, 23% of caregivers reported no knowledge of their child's disease. For delays in reaching care, 37% encountered financial problems, and 28% lacked an appropriate diagnosis from a health center, contributing to delays in receiving care. Conclusions: Delays in care are frequent for children with low ARMs. Finances and caregivers’ and health-care workers’ knowledge contribute significantly to these delays. To mitigate these delays, we recommend improving referral processes, prioritizing newborn screening examinations, advocating for a national child health insurance policy, and enhancing the training of primary health-care providers.