Demographics, referral patterns and outcome of neural tube defect patients in Southwestern Uganda

Abstract

Purpose In Uganda, the burden of neural tube defects (NTDs) poses a serious neurosurgical and public health challenge; however, published data on this patient population is lacking. We sought to characterize the NTD patient population, maternal characteristics, referral patterns of these patients, and quantify the burden of NTDs in Southwestern Uganda. Methods A retrospective neurosurgical database at a referral hospital was reviewed to identify all patients with neural tube defects treated between 08/2016 and 05/2022. Descriptive statistics were used to characterize the patient population and maternal risk factors. Results 232 patients were identified (121 male, 52.2%). Median age at presentation was 2 days (IQR: 1–8). 86.8% of NTD patients presented with spina bifida (n = 204) and 31 with encephalocele (13.2%). The most common location of dysraphism was lumbosacral (n = 180, 88%). Median length of stay was 12 days (IQR: 7–19). One-third of all patients presented from Isingiro, Mbarara, and Kasese. The median maternal age was 26 years (IQR: 22–30). The majority of mothers received only primary education (n = 100, 43.7%). The majority of mothers reported prenatal folate use (n = 158, 67.2%) and regular antenatal care (ANC) (n = 220, 93.6%), although only 23.4% underwent an antenatal ultrasound (n = 55). Of all patients, 80% were delivered vaginally (n = 188). Overall, 67.4% of patients were discharged (n = 157) and 10% died (n = 23). Conclusions This is the first study to describe the NTD patient and maternal population in Southwestern Uganda. A prospective case-control study is necessary to identify unique demographic and genetic risk factors associated with NTDs in this region.