Demographics, referral patterns, and outcome of patients with neural tube defects in southwestern Uganda

Abstract

OBJECTIVE In Uganda, the burden of neural tube defects (NTDs) poses a serious neurosurgical and public health challenge; however, published data on this patient population are lacking. The authors sought to characterize the population of patients with NTDs, maternal characteristics, and referral patterns of these patients, and to quantify the burden of NTDs in southwestern Uganda. METHODS A retrospective neurosurgical database at a referral hospital was reviewed to identify all patients with NTDs treated between August 2016 and May 2022. Descriptive statistics were used to characterize the patient population and maternal risk factors. A Wilcoxon rank-sum test and chi-square test were used to determine the association between demographic variables and patient mortality. RESULTS A total of 235 patients were identified (121 male, 52%). The median age at presentation was 2 days (IQR 1–8 days). A total of 87% of patients with NTDs presented with spina bifida (n = 204) and 31 presented with encephalocele (13%). The most common location of dysraphism was lumbosacral (n = 180, 88%). Of all patients, 80% were delivered vaginally (n = 188). Overall, 67% of patients were discharged (n = 156) and 10% died (n = 23). The median length of stay was 12 days (IQR 7–19 days). The median maternal age was 26 years (IQR 22–30 years). The majority of mothers received only primary education (n = 100, 43%). The majority of mothers reported prenatal folate use (n = 158, 67%) and regular antenatal care (n = 220, 94%), although only 23% underwent an antenatal ultrasound (n = 55). Mortality was associated with younger age at presentation (p = 0.01), need for blood transfusion (p = 0.016) and oxygen supplementation (p < 0.001), and maternal education level (p = 0.001). CONCLUSIONS To the authors’ knowledge, this is the first study to describe the population of patients with NTDs and their mothers in southwestern Uganda. A prospective case-control study is necessary to identify unique demographic and genetic risk factors associated with NTDs in this region.