Estimating the prevalence of infectious diseases from under-reported age-dependent compulsorily notification databases

TL;DR

This paper introduces a method to estimate the true prevalence of infectious diseases from incomplete notification data, demonstrated with hepatitis C in Brazil, revealing a much higher actual infection rate than reported.

Contribution

The paper presents a novel iterative model that estimates total disease prevalence accounting for under-reporting, adaptable to various diseases and contexts.

Findings

Estimated hepatitis C prevalence in Brazil ranges from 1.6 to 1.62 million cases.

Reported cases account for only a small fraction of actual infections.

The method can be applied to other underreported phenomena like criminality.

Abstract

Background: National or local laws, norms or regulations (sometimes and in some countries) require medical providers to report notifiable diseases to public health authorities. Reporting, however, is almost always incomplete. This is due to a variety of reasons, ranging from not recognizing the diseased to failures in the technical or administrative steps leading to the final official register in the disease notification system. The reported fraction varies from 9% to 99% and is strongly associated with the disease being reported. Methods: In this paper we propose a method to approximately estimate the full prevalence (and any other variable or parameter related to transmission intensity) of infectious diseases. The model assumes incomplete notification of incidence and allows the estimation of the non-notified number of infections and it is illustrated by the case of hepatitis C in Brazil. The method has the advantage that it can be corrected iteratively by comparing its findings with empirical results. Results: The application of the model for the case of hepatitis C in Brazil resulted in a prevalence of notified cases that varied between 163,902 and 169,382 cases; a prevalence of non-notified cases that varied between 1,433,638 and 1,446,771; and a total prevalence of infections that varied between 1,597,540 and 1,616,153 cases. Conclusions: We conclude that that the model proposed can be useful for estimation of the actual magnitude of endemic states of infectious diseases, particularly for those where the number of notified cases is only the tip of the iceberg. In addition, the method can be applied to other situations, such as the well known underreported incidence of criminality (for example rape), among others.