Background: Childhood mortality has decreased significantly in Mongolia since 1990. Diseases that can be treated with surgery – injuries, congenital anomalies, some infections – are increasing in importance as result of successful efforts to treat and prevent respiratory infections, diarrhea, and other common conditions. Children have unique diseases and physiology that require specially trained providers, and appropriately-sized supplies and equipment. We characterize the epidemiology of congenital anomalies and assess pediatric surgical capacity nation-wide.
Methods: Using data from a passive-reporting congenital anomaly registry and a national birth registry, we describe prevalence at birth, case characteristics, outcomes, and associated factors of major congenital anomalies.
The validated 118-item pediatric personnel, infrastructure, procedures, equipment, and supplies (PediPIPES) survey tool was used to collect data from 21 provincial center hospitals using the REDCap database platform. All surveys were conducted in-person, with multiple local practioners providing input at each site. Visual verification of infrastructure, equipment, and supplies was completed where circumstances permitted.
Results: In 2015, there were 9.9 major congenital anomalies per 1000 live births (95% CI 9.2-10.6), when congenital infection syndromes are included. Less than 20% of the registry cases were diagnosed prenatally. The provincial prevalence ranged from 2.7-15.7 per 1000 live births. The population with congenital anomalies was significantly smaller, and among singletons, more likely to be preterm when compared to all births.
The PediPIPES indices range from 7.2-14.2. The highest indices were in hospitals in the northern region, though the regional difference was not significant by ANOVA. All facilities do basic surgical procedures -- an average of 76% of the 46 surgical procedures are performed at the hospitals surveyed. All but one have anesthetists. Seven facilities do pyloromyotomy and 11 remove foreign bodies from the esophagus or trachea. Ten facilities have pediatric-sized nasogastric tubes, one has chest tubes. 13 have any endoscope.
Conclusions: The birth prevalence of major congenital anomalies is 3-6 times lower than expected based upon worldwide averages of 30-60 per 1000 live births. Further study is needed. Current infrastructure, equipment, supplies and personnel at the provincial center hospitals allow for basic procedures for adults, but essential pediatric supplies are often lacking. As a result, certain life-saving procedures are not available to children. These patterns of procedure, equipment, and supply availability should be further explored to aid in developing a comprehensive nationwide pediatric surgical program and addressing specific gaps. Our data is limited because the survey did not include subspecialty areas such as neurosurgery, or outcome data; future surveys should incorporate such items.
Co-authors: Burmaa Sanjaa MD MS, Sanchin Urjin MD PhD, Sarnai Erdene, Nomindelger T., Diana Farmer MD, Erdenetsetseg Chuluun MD
