Statistical Methods in Medical Research 2006; 15: 235–253 Estimating the variance of cancer prevalence from population-based registries

Cancer prevalence is the proportion of people in a population diagnosed with cancer in the past and still alive. One way to estimate prevalence is via population-based registries, where data on diagnosis and life status of all incidence cases occurring in the covered population are collected. In this paper, a method to estimate the complete prevalence and its variance from population-based registries is presented. In order to obtain unbiased estimates of the complete prevalence, its calculation can be thought as made by three steps. Step 1 counts the incidence cases diagnosed during the period of registration and still alive. Step 2 estimates the expected number of survivors among cases lost to follow-up. Step 3 estimates the complete prevalence by taking into account cases diagnosed before the start of registration. The combination of steps 1+2 is defined as the counting method, to estimate the limited duration prevalence; step 3 is the completeness index method, to estimate the complete prevalence. For early established registries, steps 1+2 are more important than step 3, because observation time is long enough to include all past diagnosed cases still alive in the prevalence data. For more recently established registries, step 3 is by far the most critical because a large part of prevalence might have been diagnosed before the period of registration (Corazziari I, Mariotto A, Capocaccia R. Correcting the completeness bias of observed prevalence. Tumori 1999; 85: 370–81). The work by Clegg LX, Gail MH, Feuer EJ. Estimating the variance of disease-prevalenc