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INTRODUCTION: Neural tube defects such as anencephaly, spina bifida, and encephalocele are congenital anomalies of the central nervous system. Data on the prevalence of neural tube defects in Kenya are limited. This study characterizes and estimates the prevalence of spina bifida and encephalocele reported in a referral hospital in Kenya from 2005-2010.
The study was conducted at the AIC Kijabe Hospital which is located in Lari District of Central province in Kenya, approximately 60 km northwest from the capital city of Nairobi. The hospital has a pediatric neurosurgical center that began providing neurologic services in November 2004, and serves as a specialized training, referral, and treatment center for pediatric patients from across the country. The unit has 67 beds and two operating rooms. The unit focuses mainly on children with surgical disabilities that include, but are not limited to, spina bifida and hydrocephalus. During the study period (2005-2010), the specialized center included 14 satellite ambulatory clinics across the country where patients can be followed after surgery by nurses and therapists (Figure 1). In addition, these clinics help identify potential new patients and refer them to AIC Kijabe Hospital for appropriate services. Geographic distribution of spina bifida and encephalocele prevalence rates by maternal residence among patients attending African Inland Church Kijabe Hospital, Kenya, 2005-2010 An administrative database managed by the neurosurgical center at AIC Kijabe Hospital using Microsoft Access (Microsoft, WA, USA) containing information from all patients attending the neurosurgical center was used to assess the prevalence of neural tube defects. This database was established to monitor administrative functions in the hospital and was not originally intended to support health-related surveillance activities. For all patients admitted to the hospital, demographic, admission, and treatment information were collected in this database. Clinical diagnoses were reported by the neurosurgeons. Data used in this study included date of birth, sex, diagnoses of birth defects, and maternal residence. Maternal residence was defined by city or village location. Cities and villages of residence reported in the database were assigned to one of the eight provinces in Kenya (i.e., Nairobi, Coast, North Eastern, Eastern, Central, Western, Nyanza, and Rift Valley). For purposes of this study, patients with a clinical diagnosis of anencephaly, spina bifida, or encephalocele who were admitted to AIC Kijabe Hospital from 2005 to 2010 were eligible for inclusion. An anencephaly case was defined as any reported diagnosis of anencephaly. A spina bifida case was defined as any reported diagnosis of lipomyelomeningocele, meningocele, myelomeningocele, spina bifida cystica, open spina bifida, and spina bifida unspecified. An encephalocele case was defined as any reported diagnosis of frontal, nasal, frontal-nasal, occipital encephalocele and encephalocele unspecified. Cases were included in the analysis if they met the case definition for a neural tube defect, were born in Kenya from 2005-2010, and a reported maternal residence in Kenya. If maternal residence corresponded to a country other than Kenya, had a city or village name missing or that did not correspond to a province in Kenya, the case was excluded from the analyses. Although neural tube defects data were available in the database for additional years (1998-2004 and 2011-2012), accurate live-birth population estimates were only available from the Kenya Bureau of Statistics from 2005-2010 [22]; therefore, analyses were limited to these years. This resulted in a final sample size of 1,272 neural tube defect cases. The database provided up to five different diagnoses for each case. Any case with a duplicate diagnosis (e.g., spina bifida was listed multiple times), was only counted once. A case with several diagnoses (e.g., spina bifida, hydrocephalus, and talipes equinovarus) was counted as a neural tube defect. The denominator for all estimates were based on the total number of reported live-births (i.e., homes, hospitals and clinics births) per province from 2005-2010 by the Kenya National Bureau of Statistics [22]. Descriptive analyses were performed to estimate the prevalence of patients with neural tube defects by year admitted to AIC Kijabe Hospital from 2005-2010. Prevalence was calculated by the number of neural tube defect cases identified (numerator) divided by the number of live births by year from 2005-2010 reported by the Kenya National Bureau of Statistics [22]. Estimates by province were calculated using the corresponding number of live births by year by province as the denominator. We calculated 95% confidence intervals (CI) for each prevalence estimate based on exact Poisson limits [23]. Statistical analyses were performed using SAS version 9.3 (SAS Institute, Cary, NC, USA). Geographical distribution of prevalence estimates were performed using EPIINFO version 7 (U.S Centers for Disease Control and Prevention, Atlanta, GA, USA). The investigation was approved by the Kenyan Ministry of Health and AIC Kijabe Hospital. Since this investigation was considered a public health response, and included only retrospective analysis of data, no formal ethical review was required. The study was approved by the ethics committee at the hospital. No names or personal identifying information were associated with reported data. Appropriate measures were taken to assure the database was properly stored and secured.
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