Global Report Card for Spina Bifida and Hydrocephlaus Prevention and Care

Situation …
Neural tube defects (spina bifida and anencephaly being the most common of these) are serious birth defects of the brain and spine and are a significant cause of death and lifelong disability worldwide. Children born with spina bifida who survive often face a lifetime of disability and medical interventions. [Approximately 60% of children with spina bifida will develop hydrocephalus.]  Spina bifida and other neural tube defects also have significant impacts on quality of life, with physical and intellectual disabilities that range from mild to severe. Spina bifida occurs in the first few weeks of pregnancy and there are steps that pregnant women can take to reduce the risk that their baby will be born with spina bifida. Folic acid supplementation has been shown to reduce these risks, and national folate fortification programmes (such as wheat and maize fortification) help women to consume the recommended amount of folic acid.

Hydrocephalus (a condition where the primary characteristic is excessive fluid in the brain) affects individuals of all ages, from infants to seniors. An individual can be born with hydrocephalus, acquire it from a brain injury, infection, or tumor, among other causes, or develop it as part of the aging process. Intervention measures can assist in preventing the development of hydrocephalus that results from neonatal infection. The only treatment for hydrocephalus requires brain surgery, and repeated surgeries are often needed over the course of an individual's life due to high failure rates of the predominant treatment—the insertion of a medical device called a shunt into the brain. This is particularly challenging in developing countries with limited access to the appropriate medical professionals. There is no cure for hydrocephalus and, if left untreated, it can cause severe physical and cognitive disabilities and, often, death.
 
Affordable and accessible multidisciplinary approach is  the best way to treat, support, and follow up a person with spina bifida and/or hydrocephalus.

Impact …
Spina bifida and hydrocephalus not only impact those affected, but also families, communities, and health care service delivery systems. With more than 400,000 babies born with hydrocephalus and/or neural tube defects each year, and reported high cases of hydrocephalus in Sub-Saharan Africa, great prevention and care opportunities remain.

Action …
PUSH! is committed to uniting organisations as the global voice, to accelerate spina bifida and hydrocephalus prevention, and to realize optimal care and a better quality of life for those affected.  

Recognizing that knowledge is power, PUSH! has developed Global Report Cards for Spina Bifida and Hydrocephalus Prevention and Care. The report cards provide country and regional snapshots of indicators grouped by World Health Organization (WHO) regions.

These snapshots provide meaningful, tangible information in areas deemed to be “actionable.” Our hope is that the Global Report Cards for Spina Bifida and Hydrocephalus Prevention and Care will serve as a platform for countries and organisations to move to action, further efforts and accelerate change.

The PUSH! Global Report Card for Spina Bifida and Hydrocephalus Prevention and Care is designed to provide meaningful, actionable country-level information to help accelerate change.

The report card informs on four primary indicators:
1. Data: Availability of country level spina bifida and hydrocephalus specific data
2. Prevention: Implementation of policy-level prevention measures
3. Access to care: Availability and access to care
4. Quality of care: Official recognition of the rights of persons with disabilities

The PUSH! country snapshots are organized by WHO region.  Please click on the regional name to view the snapshots.

Click here for more information on the report card scoring criteria and all of the recommendations for each of the indicators

Collaboration ...
PUSH! would like to acknowledge the Center for Spina Bifida Prevention at the Rollins School of Public Health of Emory University for its assistance in making the Global Report Cards for Spina Bifida and Hydrocephalus Prevention and Care a reality. Specifically, we are grateful to the expertise and collaboration of Godfrey Oakley and Vijaya Kancherla who have worked hand-in-glove with PUSH! to move this work forward. We are also thankful for the time, talent and focused diligence of Samantha Lange, Ali Rashid and Jordan Rief.

For more information on the Global Report Cards for Spina Bifida and Hydrocephalus Prevention and Care: click here

Methodology ... 

February 2017: The paper "Scorecard for spina bifida research, prevention, and policy - A development process." has been published and is available online.