Quantify registry effects before citing prevalence

Updated: 2015.01.04 11Y ago 2 sources
National prevalence reports should routinely publish a standardized, quantitative decomposition of observed trend changes into components: diagnostic‑criteria shifts, registry coverage changes (inpatient→outpatient), and residual (possible incidence) change. The approach uses time‑dependent covariates on population cohorts to estimate attributable fractions, so reported prevalence numbers come with an auditable attribution. — Requiring a transparent attribution statement with every prevalence release would prevent misleading headlines, focus policy on service needs driven by true incidence, and improve public trust in health statistics.

Sources

Explaining the increase in the prevalence of autism spectrum disorders: the proportion attributable to changes in reporting practices - PubMed
2015.01.04 100% relevant
Hansen et al. (JAMA Pediatr 2015) applied a stratified Cox model with time‑dependent covariates for Denmark and estimated that registry/diagnostic changes explained ~60% of the ASD prevalence rise — a concrete template for the proposed reporting standard.
The changing prevalence of autism in California - PubMed
2002.06.05 90% relevant
The article provides direct empirical support for this idea: using California birth cohorts (1987–1994) the authors identified 5,038 autism cases among 4,590,333 births and report autism prevalence rising from 5.8 to 14.9 per 10,000 while 'mental retardation without autism' fell from 28.8 to 19.5 per 10,000—an almost identical absolute change that implicates registry/diagnostic effects rather than a clear incidence surge.
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