New Report: Spina Bifida
A team of Institute on Community Integration researchers has provided the first-ever U.S. data on the prevalence of spina bifida across the lifespan, critical information for public health agencies, policymakers, and others as longevity among people with the condition increases.
Writing in Developmental Medicine & Child Neurology , the ICI-led team estimated that at least 92,551 people live with the condition, which occurs when the spine and spinal cord don’t form properly during pregnancy. This can lead to a range of disabilities in children.
Using claims data from Medicaid, Medicare, and private insurers, the overall prevalence estimate was 3.2 per 10,000 people. Medicaid data showed the highest prevalence, at 7.03. Data from Medicare revealed a prevalence of 5.03, and the rate among private insurers was 1.72.
"This study illustrates the feasibility of assessing the prevalence of rare conditions using large claims databases,” said ICI’s Julie Bershadsky, lead author of the study. “It also shows the benefit of assessing prevalence across both the private and public insurance sectors, because estimates varied widely across the administrative data sets.”
Bershadsky said the study will help public health agencies better plan for serving people who need services related to the condition throughout their lives. It will also guide future research and clinical service delivery to those living with spina bifida and other rare conditions.
“Much of what we know about spina bifida comes from birth prevalence studies, but people with spina bifida are living longer lives. Lifespan prevalence estimates are essential for understanding the size of this community and planning services, research, and supports throughout adulthood,” said Jennifer Hall-Lande, another researcher on the ICI team. “This study is the first to provide national, all-age estimates of spina bifida prevalence across states, offering a more complete picture of how many people are living with spina bifida across the lifespan in the United States.”
Catharine Riley, Tiebin Liu, and Jennita Reefhuis from the U.S. Centers for Disease Control and Prevention contributed to the study, along with ICI’s Sandra Pettingell, Sheryl Larson, and Libby Hallas.
ICI, a federally designated University Center for Excellence in Developmental Disabilities , conducts prevalence studies in autism, cerebral palsy, and other complex health conditions. It also provides education and training for professionals and service providers supporting people with intellectual and other developmental disabilities (IDD), research aimed at improving disability policies and practices, and knowledge translation strategies that share research findings across a wide spectrum of audiences.