Are cancer survivors willing to participate in research?

Little is known about the late and long term effects of having survived cancer and its treatments. A cancer survivor registry with a representative longitudinal cohort of survivors from all types of cancers would facilitate the study of these effects. A group of researchers, cancer survivors and cancer registrars used hospital cancer registries to identify cancer survivors diagnosed from 1990 through 2006. All eligible cancer survivors were invited to participate in a cancer survivor registry. We describe our methods for engaging the community, who responded to the invitation and who agreed to participate. We used Chi square tests with a significance level of .05 to assess associations with response and participation rates. We used logistic regression to examine associations with participation after adjustment for the effect of age. Logistic regression was also used to assess the independent effects of those variables that were significantly associated with participation after adjustment for age. Of the 6031 eligible survivors, 55% responded to the invitation. Of those who responded 61% agreed to participate in the cancer survivor registry for an overall participation rate of 33%. Rural residence, less education, full time employment, and lower income were independently related to not participating, but marital status was not associated with participation after adjustment for these variables. It is very difficult to recruit a representative sample of cancer survivors to participate in a cancer survivor registry. More research on how to engage the underserved population (rural residents, less education and lower income) is warranted.