Getting cancer prevalence right: using state cancer registry data to estimate cancer survivors

Objective Cancer incidence and mortality statistics provide limited insight regarding the cancer survivor population and its needs. Cancer prevalence statistics enumerate cancer survivors-those currently living with cancer. Commonly used limited-duration prevalence (LDP) methods yield biased estimates of the number of survivors. National estimates may not allow sufficient granularity to inform local survivorship programs. In this study, complete prevalence (CP) methods are applied to actual North Carolina Central Cancer Registry (NCCCR) data to generate better, more informative prevalence estimates than previous methods. Methods Data included all incident cases for 1995-2007 from the NCCCR and US Census population data. SEER*Stat software was used to calculate 13-year LDP. ComPrev software was used to estimate CP for each cancer site, gender, and race combination. Results CP methods estimated 362,810 survivors in North Carolina on January 1, 2008, 40% more than LDP estimates of 258,556, with substantial racial, regional, and gender differences in prevalence rankings of several cancers. Conclusion CP estimates are substantially higher than previous prevalence estimates. This study found previously unrecognized racial, regional, and gender differences. State and local programs may apply these methods using their own data to develop better, more detailed estimates to improve planning for their specific survivor populations' needs.