Scorecard for spina bifida research, prevention, and policy - A development process.

Spina bifida is a serious and largely preventable neural tube birth defect and an important cause of mortality and lifelong disability. The People and Organizations United for Spina Bifida and Hydrocephalus (PUSH!) Global Alliance was formed in 2014 to provide a common platform for various organizations worldwide to raise the visibility of spina bifida and hydrocephalus. In its formative phase, the alliance recognized that in order to accelerate surveillance, prevention, and care for these conditions, there was a need to provide an evidence-based assessment of how nations are performing in specific areas. In this paper, we describe the impetus for, and the process of, developing country-level scorecards for spina bifida surveillance, prevention and care. The PUSH! Executive Committee formulated a comprehensive list of six actionable indicators measuring availability of published studies on population-based folate studies; surveillance of prevalence and mortality; prevention-based policies; access to care; and quality of life associated with spina bifida. Rubrics were developed to score each country on the aforementioned indicators. Country scores were pooled across each indicator and the composite scores ranged between zero and three if there was a need for improvement, four and five if they were in good standing, or six for an excellent status. The scorecard included country-specific recommendations assimilated from the literature and published guidelines to aid policy makers in accelerating surveillance and prevention, and improving the care and quality of life indicators. For comparison, country-level scorecards were grouped by WHO-regions. Score cards were made available publicly through the website "www.pu-sh.org".

Prevention of spina bifida: folic acid intake during pregnancy in Gulu district, northern Uganda.

INTRODUCTION: The intake of folic acid before conception and during the first trimester of pregnancy can prevent spina bifida. This paper describes folic acid intake in women in Gulu district in northern Uganda. METHODS: Structured interviews were held with 394 women attending antenatal care (ANC), 15 mothers of children with spina bifida, and 35 health workers in 2012 and 2013. SPSS16 was used for data analysis. RESULTS: 1/4 mothers of children with spina bifida took folic acid during late pregnancy, none preconception. None had knowledge about folic acid and spina bifida prevention. 33.5% of women attending ANC had ever heard about spina bifida, 1% knew folic acid intake can prevent spina bifida. 42.4% took folic acid supplements in late pregnancy, 8.1% during the first trimester, none preconception. All women said to have eaten food rich in folic acid. None were aware about fortified foods. 7% of health workers understood the importance of early folic acid intake. All health workers recommended folic acid intake to women attending ANC. 20% of the health workers and 25% of the women said folic acid supplements are not always available. CONCLUSION: Folic acid intake is limited in northern Uganda. This is attributed to limited education and understanding of women and health workers about the importance of early folic acid intake, late presentation of women at ANC, poor supply chain and dilapidated health services caused by war and poverty. A combination of food fortification, sensitization of health workers, women, and improving folic acid supply is recommended.

Building capacity for birth defects surveillance in Africa: Implementation of an intermediate birth defects surveillance workshop.

Each year around the world, it is estimated that 300,000 neonates are born with a neural tube defect. Many countries, however, are still lacking comprehensive birth defects surveillance registries. Comprehensive birth defects surveillance systems can help countries understand the magnitude and distribution of the problem. These systems can also provide information about biological, contextual, social and environmental determinants of birth defects. This information in turn can be used to identify effective and implementable solutions, and to evaluate prevention and management strategies to improve quality performance. This paper summarizes the development and implementation of an online pre-course training and in-person surveillance workshop conducted between 2014 December and 2015 March for representatives from six African countries. Feedback given by participants provided valuable lessons learned that can be applied to subsequent trainings and workshops.