Facilitating Informed Decision Making about Breast Cancer Risk and Genetic Counseling Among Women Calling the NCI's Cancer Information Service

ABSTRACT

Despite increased interest among the public in breast cancer genetic risk and genetic testing, there are limited services to help women make informed decisions about genetic testing. This study, conducted with female callers (N = 279) to the National Cancer Institute's (NCI's) Atlantic Region Cancer Information Service (CIS), developed and evaluated a theory-based, educational intervention designed to increase callers' understanding of the following: (a) the kinds of information required to determine inherited risk; (b) their own personal family history of cancer; and (c) the benefits and limitations of genetic testing. Callers requesting information about breast/ovarian cancer risk, risk assessment services, and genetic testing were randomized to either: (1) standard care or (2) an educational intervention.Results show that the educational intervention reduced intention to obtain genetic testing among women at average risk and increased intention among high-risk women at 6 months. In addition, high monitors, who typically attend to and seek information, demonstrated greater increases in knowledge and perceived risk over the 6-month interval than low monitors, who typically are distracted from information. These findings suggest that theoretically designed interventions can be effective in helping women understand their cancer risk and appropriate risk assessment options and can be implemented successfully within a service program like the CIS.

This research was supported in part by the Department of Defense DAMD17-98-1-8306, DAMD17-01-1-0238, and DAMD17-02-1-0382 grants, the Fox Chase Cancer Center's Behavioral Research Core Facility (P30CA06927), and NIH grant R01HG01766. We thank the Atlantic Region CIS Information specialists, who provided important insights into the development of the interventions and who diligently implemented the interventions over 2 years; Nancy McKeown Conn and Lisa Brower for their superb management of all aspects of the research project; and Susan Echtermeyer and Jamie Rodriguez for manuscript production.

Notes

¹Subjects who could not be reached at 2 weeks were maintained in the study and were eligible for 2-month follow-up.

²Those who were not able to be reached at either 2 weeks or 2 months were not included in the 6-month follow-up interview.

*Assessed on a 5-point scale, 1 being not at all, 5 being very much.