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

• Published in: Preventive medicine 2019-06, Vol.123, p.1-7
• Main Authors: Kancherla, Vijaya, Weakland, Aliki P., Xu, Sunny Y., Walani, Salimah R.
• Format: Article
• Language: English
• Subjects: Biomedical Research - statistics & numerical data; Birth defects; Congenital anomalies; Epidemiology; Evaluation; Female; Folic acid; Global Health; Health Policy; Humans; Male; Monitoring; Population Surveillance; Prevalence; Preventive Health Services - organization & administration; Scorecard; Spina bifida; Spinal Dysraphism - epidemiology; Spinal Dysraphism - prevention & control; World Health Organization
• ISSN: 0091-7435; 1096-0260
• DOI: 10.1016/j.ypmed.2019.02.020

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. •Spina bifida is an important cause of mortality and lifelong disability worldwide.•We present country-level performance on spina bifida research, prevention and care.•Country scorecards and recommendations are available at http://www.pu-sh.org.•Noticeable differences in country performance by HDI status and WHO region•Spina bifida scorecards can assist as benchmarks for action and resource allocation.