Objectives: Because of the delay in availability of cancer diagnoses from state cancer registries, self-reported diagnoses may be valuable in assessing the current cancer burden in many populations. We evaluated agreement between self-reported cancer diagnoses and state cancer registry-confirmed diagnoses among 21,437 firefighters and emergency medical service workers from the Fire Department of the City of New York. We also investigated the association between World Trade Center (WTC) exposure and other characteristics in relation to accurate reporting of cancer diagnoses.
Methods: Participants self-reported cancer status in questionnaires from October 2, 2001, to December 31, 2011. We obtained data on confirmed cancer diagnoses from nine state cancer registries, which we used as our gold standard. We calculated sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV), comparing self-reported cancer diagnoses with confirmed cancer diagnoses. We used multivariable logistic regression models to assess the association between WTC exposure and correct self-report of cancer status, false-positive cancer reports, and false-negative cancer reports.
Results: Sensitivity and specificity for all cancers combined were 90.3% and 98.7%, respectively. Specificities and NPVs remained high in different cancer types, while sensitivities and PPVs varied considerably. WTC exposure was not associated with accurate reporting.
Conclusion: We found high specificities, NPVs, and general concordance between self-reported cancer diagnoses and registry-confirmed diagnoses. Given the low population prevalence of cancer, self-reported cancer diagnoses may be useful for determining non-cancer cases. Because of the low sensitivities and PPVs for some individual cancers, however, case confirmation with state cancer registries or medical records remains critically important.