Predictors of enrollment into a familial cancer registry.

A35

Cancer registries are an invaluable resource for cancer research as they provide a sample for study that might otherwise be difficult to gather. We sought to identify patient factors that characterize those who enroll versus those who decline participation in a Familial Cancer Registry (FCR). Individuals at risk for hereditary breast or ovarian cancer were actively recruited for the FCR by a genetic counselor at the beginning of a genetic counseling education session. Prior to this genetic counseling session, participants completed a baseline interview that included assessment of demographic, clinical, and psychosocial variables. A total of 567 participants (Mean age = 48.6 years; range 19 - 86 years; 88% women, 12% men) completed the baseline telephone interview and were invited to enroll in the FCR. Of the 567 participants 81% (n=460) enrolled in the FCR and 19% (n=107) declined participation. Bivariate analysis showed that FCR participation was related to lower levels of general distress, a greater number of first-degree relatives affected with breast or ovarian cancer, a personal history of breast cancer, and being non-Jewish. To identify independent predictors of participation, we included these variables in a logistic regression model with backward elimination of nonsignificant variables. Variables independently associated with FCR participation were: personal history of breast cancer (OR = 1.97, 95% CI = 1.24 to 3.13), lower general distress (OR = 0.84, 95% CI = 0.76 to 0.93), and not being of Jewish descent (OR = 0.64, 95% CI = 0.40 to 0.97). These findings have implications for the generalizability of results from studies using registry samples. Moreover, results indicate that cancer registry enrollment strategies could be improved through use of tailored approaches to increase the possibility of enrollment of individuals less likely to agree to registry participation.