Scorecard for spina bifida research, prevention, and policy: Score analysis by Human Development Index and WHO region

Abstract

The People and Organizations United for Spina Bifida and Hydrocephalus (PUSH!) Global Alliance created scorecards to rate country-level performance on spina bifida, including folate status among women of reproductive age; birth prevalence and mortality associated with spina bifida; prevention strategies; access to care; and the country's engagement in the UN Convention on the Rights of Persons with Disabilities. A total of 187 countries were examined based on a criteria-based scoring system represented by stars (http://www.pu-sh.org). This paper summarized scores by Human Development Index (HDI) classification spanning six World Health Organization (WHO) regions. For every indicator stratified by HDI classification, a greater proportion of 'Very High' and 'High' HDI countries scored a full star (highest performance) compared to countries in the 'Medium' and 'Low' HDI strata. A majority of countries in the South East Asia (SEARO) region received full stars for availability of published studies on folate status among women of reproductive age, and most countries in the European region scored full stars for surveying birth prevalence of spina bifida. Very few countries in the European (EURO) and SEARO region had full stars for prevention strategy for spina bifida through fortification. Overall, 90% of countries did not have published studies on spina bifida mortality. This is the first time country-level performance for spina bifida research, prevention and care, grouped by HDI and WHO region has been examined. Policy-makers and stakeholders can use our analyses as benchmarks in their efforts to improve spina bifida surveillance, prevention and care and to close gaps.

Keywords: Birth defects; Congenital anomalies; Epidemiology; Evaluation; Folic acid; Global Health; Monitoring; Scorecard; Spina bifida.