Using administrative healthcare databases to estimate the prevalence of spina bifida across the lifespan: Challenges and opportunities

Short abstract

This commentary is on the original article by Bershadsky et al. on pages 1246–1252 of this issue.

Birth defect prevalence studies are mainly designed to examine live newborn infants and provide a quantitative estimate of their magnitude. Ideally, these prevalence rates should also include stillbirths, spontaneous abortions, and elective terminations of pregnancies due to fetal anomalies. Birth defects surveillance is widely used to monitor trends, identify clusters, and recognize risk factors associated with malformations within specific populations and time periods. However, to evaluate other aspects such as survival, clinical outcomes, comorbidities, and healthcare access and utilization among children, adolescents, and adults affected by birth defects, alternative methodological approaches are required. Lifelong surveillance of birth defects requires access to various clinical data sources, including health insurance claims, hospital discharge records, and clinical and surgical data. ¹ , ² These types of studies provide information about changes in prevalence rates throughout the lifespan and help to understand the needs of individuals living with defects, thereby promoting opportunities for secondary prevention. ²

The study by Bershadsky et al. ³ is an important contribution to the existing literature. The authors utilized three public‐payer data sets and one large employer‐sponsored insurance database to estimate the prevalence of spina bifida across the lifespan in the USA during the period 2017 to 2019. Individuals with spina bifida were identified using the International Classification of Diseases, 10th Revision (ICD‐10), categorized by USA state of origin, and analyzed by sex and ethnicity. The prevalence of spina bifida from birth to age 65 years was estimated to be 3.2 per 10 000 based on a sample size of more than 155 million insured individuals, indicating that during the study period, at least 92 551 individuals in the USA were living with spina bifida.

It should be noted that prevalence studies based on administrative healthcare databases have several limitations concerning the ascertainment and accuracy of case identification through health insurance claims, which may affect their reliability. One such limitation is the recognized lower positive predictive value of ICD codes in identifying cases. ⁴ Additionally, these studies often lack sufficient information on disease severity. ² In this context, it is important to note that the study by Bershadsky et al. ³ does not distinguish between open and closed spina bifida. This distinction is crucial for future prevalence comparisons because only open spina bifida is influenced by factors such as geographic region (including ethnicity and income level) and the use of folic acid fortification.

Administrative healthcare databases continue to face challenges due to variations in agreements regarding the use of personal data, differing laws and regulations on sharing personally identifiable information, and the diverse types of software employed to capture and manage such data. ⁵ However, extending birth defect surveillance programs to include individuals into adulthood presents a valuable opportunity for healthcare systems. Accurately determining the number of individuals living with spina bifida at various ages within a specific region, state, or country is essential for evaluating and improving medical care and quality of life for children, adolescents, and adults with spina bifida. ² , ³ To enhance comparability across future studies, it is crucial to continue efforts to standardize the data sets used by different administrative healthcare databases.

DATA AVAILABILITY STATEMENT

Not required.