Published in Cancer Detection and Prevention 2003; 27(5).

Information needs about hereditary breast cancer among women with early-onset breast cancer

Wendy F. Cohn, PhDa, Mary E. Ropka, PhDa, Susan M. Jones, MSb, Susan Miesfeldt, MDc

aDepartment of Health Evaluation Sciences, University of Virginia Health System, P.O. Box 800717, Charlottesville, VA 22908, USA bCancer Center, University of Virginia Health System, Charlottesville, VA 22908, USA cDepartment of Internal Medicine, University of Virginia Health System, Charlottesville, VA 22908 USA

To explore hereditary breast cancer (HBC) information needs of early-onset breast cancer survivors, two questionnaires were mailed to women diagnosed at age <50 years. The family history questionnaire, sent to women treated at 34 Virginia hospitals, was designed to identify women with suspected HBC versus women with presumed sporadic breast cancer (SBC). Among 314 respondents, 137 reported personal/family histories suggestive of HBC. A total of 287 (87%) participants responded to the subsequent knowledge, attitudes, and beliefs questionnaire, which assessed HBC knowledge, attitudes, and beliefs, including HBC information needs, sources, and perceived value. Fifty-two percent of women reported seeking any HBC information. Women with presumed SBC were as likely to seek information as those with suspected HBC. Women with daughters were more likely to seek information. Many (71%) women reported finding the information sought, including information about their children's and relatives' risks, DNA testing, treatment differences for HBC, and genetic counseling.

KEY WORDS: Hereditary breast cancer, Information needs, Information sources, Education, Counseling.