Prevalence of spina bifida across the lifespan in the USA.

AIM: To estimate the prevalence of spina bifida across the lifespan, the number of people with spina bifida by state, and variations in spina bifida prevalence by insurance type, state, and selected demographics.

METHOD: This was an observational study that used administrative insurance data. We used three public-payer data sets (Medicaid Fee for Service, Medicare, and Medicare Advantage) and one large employer-sponsored insurance database (Health Care Cost Institute [HCCI]) to estimate all-age prevalence of spina bifida in the USA. Claims data from 2017 to 2019 were used to identify spina bifida based on International Classification of Diseases, 10th Revision codes.

RESULTS

The overall prevalence estimate of spina bifida was 3.20 per 10 000 (7.03 for Medicaid, 5.03 for Medicare, 1.72 for HCCI) and varied by demographics. We estimate at least 92 551 people in the USA live with spina bifida.

INTERPRETATION: Most spina bifida prevalence estimates focus on birth prevalence. This study demonstrates that prevalence estimates across all ages throughout the lifespan can be generated using multiple insurance data sources.