Background
Developing countries bear the burden of childhood stunting but lack resources for cohort studies to develop preventive strategies. To enable future prospective studies, we designed and tested the Child Electronic Growth Monitoring System (CEGROMS) using a readily available electronic data capture platform, the Research Electronic Data Capture (REDCap).
Objectives
To demonstrate the feasibility of using CEGROMS for data collection for a pilot study for the Kaduna Infant Development (KID) Birth Cohort Study in Nigeria.
Methods
CEGROMS consists of the data capture form for growth monitoring, a central cloud server, electronic tablets, and desktop computer. We implemented the pilot study in 2017‐2019 at the Barau Dikko Teaching Hospital, Kaduna, Nigeria. Odds ratios (OR) and 95% confidence intervals (CI) were calculated for completeness of baseline data (relative to individuals with incomplete data) and completion of follow‐up at different time points (relative to individuals with no follow‐up visit) by the participant characteristics. Complete data were defined as date of birth, sex, and birthweight recorded at recruitment.
Results
Among 3152 infant records in CEGROMS, 2789 (88.5%) had complete data. Of these, 1905 (68.3%) had at least one follow‐up visit. The main determinants of data completeness were health facility delivery (OR 19.17, 95% CI 13.65, 26.92) and tertiary education (OR 3.54, 95% CI 2.69, 4.67). Follow‐up was greater for women with tertiary education (OR 1.33, 95% CI 1.06, 1.51 for at least one visit). Maternal education is associated with completeness and follow‐up (following adjustments for parity and employment).
Conclusions
The CEGROMS electronic data collection system enables complete and consistent data collection. The data will enable design of strategies to improve follow‐up in the future implementation of the birth cohort study.
BackgroundApert syndrome is a rare genetic disease that presents a diagnostic dilemma because of its similarity with other craniosynostosis syndromes. Currently, there is paucity of reports about adult patients in African medical literature. Therefore, this case report highlights medical and psychosocial problems associated with the disease in an adult woman who is resident in a resource-constrained setting.Case presentationOur patient is a 37-year-old African woman. She had abnormal characteristics of the skull, face, and extremities that were detected at birth. She is clinically stable but moderately depressed as an adult. Mutation in fibroblast growth factor receptor 2 (Ser252Trp) was positive. Her physical deformities and the laboratory findings confirmed the diagnosis of Apert syndrome. She missed opportunities for vital interventions to limit the physical and psychosocial effects of the disease, especially during early growth and developmental period, mainly due to the inadequacy of the institutions offering medical and psychosocial support. As a child she did not complete formal education or acquire vocational skills even though intellectual disability was never established. During adulthood she became socially deprived owing to her physical features and educational handicap. Her lifelong dependency is an unfortunate social consequence starting with developmental challenges encountered during childhood and worsened by adult social maladjustment.ConclusionsOur patient does not have medically life-threatening features but was depressed. We recommend strengthening of institutions for early medical intervention and lifetime psychosocial support to limit physical and psychosocial effects of Apert syndrome among adult survivors in resource-limited settings.
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