Surgeries and Surgical Care Outcomes in Spina Bifida from the National Spina Bifida Patient Registry

Surgeries and Surgical Care Outcomes in Spina Bifida from the National Spina Bifida Patient Registry

August 29, 2018: Important study released by the National Center for Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control (CDC) on Surgical Procedures.

In this study, appearing in Pediatrics, CDC scientist and other researchers describe the lifetime occurrence of common surgeries and four key health outcomes in individuals with Spina Bifida. This information can help clinicians and parents know what surgeries are common health issues may be experienced by individuals with Spina Bifida as they age.

Georgina Peacock, MD, MPH, a pediatrician explains why this study is important, “The data in this paper can be very helpful to families and care providers who are affected by Spina Bifida. I believe it will provide an excellent roadmap for discussions of treatment options for those helping those affected by Spina Bifida live their best lives.”

From the CDC:

In a study appearing in PediatricsExternal, CDC scientists and other researchers describe the lifetime occurrence of common surgeries and four key health outcomes in individuals with spina bifida. This information can help clinicians and parents know what surgeries and common health issues may be experienced by individuals with spina bifida as they age.

In this study, researchers found that

  • Individuals will all types of spina bifida commonly underwent brain and spine surgeries.
  • More than five in ten of all brain and spine surgeries took place before the first birthday.
  • Individuals with spina bifida were more likely to have surgeries before the age of one and after the age of 25 than during the intervening years.
  • Individuals with myelomeningocele (a type of spina bifida) were less likely to have positive health outcomes than individuals with non-myelomeningocele.
  • Among individuals with myelomeningocele, by age five, one in five individuals were able to manage their bowel and bladder discharge. This number increased to almost five in 10 at 17 years of age.
  • By 18 years of age, at least eight of 10-lifetime surgeries had taken place.
  • As the age of individuals with spina bifida increases, more of them experience skin breakdown and lose the ability to walk.

About this Study

  • These data describe 3,800 individuals enrolled in the National Spina Bifida Patient Registry (NSBPR) between 2009 and 2013.
  • Individuals enrolled in the NSBPR receive care at spina bifida specialty clinics across the United States. Researchers analyzed data from interviews and health records from these clinics to produce this study.

CDC manages and funds the NSBPR, and partners with spina bifida patient organizations to share research findings with families, doctors, nurses, and other healthcare professionals. CDC is the only organization in the United States conducting this broad, multi-site clinical research to help individuals living with spina bifida. The NSBPR is the largest registry of individuals with spina bifida in the United States.

 

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Reference

Study helps clinicians and families anticipate surgeries for individuals with spina bifida


2 Replies to “Surgeries and Surgical Care Outcomes in Spina Bifida from the National Spina Bifida Patient Registry”

  1. my son Arqam Ali has this condition….but thankfully he never needed brain and spine surgery…..though he had milingomilocele….he is 15 and still has urine and bowel incontinence….where can i seek help in Pakistan?

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