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Delays in Care for Children With Low Anorectal Malformations in Southwestern Uganda
Felix Oyania1, Caroline Q Stephens2, Sarah Ullrich3
1Division of Pediatric Surgery, Department of Surgery, Mbarara University of Science and Technology, Mbarara, Uganda; Center for Health Equity in Surgery and Anesthesia, University of California, San Francisco, California.
Insights
Delays in diagnosing and treating anorectal malformation (ARM) are common in low-income countries, impacting surgical outcomes. Financial and knowledge barriers significantly contribute to these delays in children.
Area of Science:
- Pediatric Surgery
- Global Health
- Neonatal Care
Background:
- Anorectal malformation (ARM) outcomes vary significantly between high- and low-income countries, potentially due to diagnostic delays.
- The Three Delays model (seeking, accessing, receiving care) helps understand challenges in low-resource settings.
- Preoperative delays in diagnosing and treating low ARM in children are a critical concern.
Purpose of the Study:
- To examine the frequency and nature of preoperative delays in children with low anorectal malformations.
- To identify factors contributing to delays in seeking, accessing, and receiving care for low ARM.
Main Methods:
- Cross-sectional study conducted in Southwestern Uganda (June 2021-July 2023).
- Included children with low ARM, defining delayed diagnosis as >48 hours of life.
- Examined caregiver, community, and health system factors associated with delays.
Main Results:
- 80 patients were included; median age at diagnosis was 29.2 days.
- Delayed diagnosis occurred in 74% of patients, with parents diagnosing in 82%.
- Key barriers included lack of caregiver knowledge (23%), financial problems (37%), and inadequate initial diagnosis (28%).
Conclusions:
- Frequent delays in care for low ARM patients in low-resource settings.
- Caregiver/healthcare worker knowledge and financial constraints are significant contributors.
- Recommendations include improved referrals, newborn screening, national health insurance, and enhanced primary care training.
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.
