The validity of self-initiated, event-driven infectious disease reporting in general population cohorts.

Background: The 2009/2010 pandemic influenza highlighted the need for valid and timely incidence data. In 2007 we started the development of a passive surveillance scheme based on passive follow-up of representative general population cohorts. Cohort members are asked to spontaneously report all instances of colds and fevers as soon as they occur for up to 9 months. Suspecting that compliance might be poor, we aimed to assess the validity of self-initiated, event-driven outcome reporting over long periods.
Methods: During two 8 week periods in 2008 and 2009, 2376 and 2514 cohort members in Stockholm County were sent one-week recall questionnaires, which served as reference method.
Results: The questionnaires were completed by 88% and 86% of the cohort members. Whilst the false positive proportion (1-specificity) in the reporting was low (upper bound of the 95% confidence interval [CI] ≤ 2% in each season), the false negative proportion (failure to report, 1-sensitivity) was considerable (60% [95% CI 52%-67%] in each season). Still, the resulting epidemic curves for influenza-like illness compared well with those from existing General Practitioner-based sentinel surveillance in terms of shape, timing of peak, and year-to-year variation. This suggested that the error was fairly constant.
Conclusions: Passive long-term surveillance through self-initiated, event-driven outcome reporting underestimates incidence rates of common upper respiratory tract infections. However, because underreporting appears predictable, simple corrections could potentially restore validity.