Breast cancer survivors' attitudes about communication of breast cancer risk to their children

Abstract Perceptions of breast cancer survivors regarding educating their children about hereditary breast cancer risk are underexplored. This study examined attitudes of early‐onset breast cancer survivors concerning whether, at what age, and how their children should be educated about potential risk for hereditary breast cancer. Women with breast cancer diagnosed < age 50 years between 1994 and 1997 were recruited from 34 Virginia hospitals. Participants responded to two surveys. The Family History Questionnaire permitted participant classification into two groups based on risk for hereditary disease, as determined by personal and family history. The Knowledge, Attitudes and Beliefs Questionnaire addressed participants' concerns regarding their children's breast cancer risk, perceptions of their children's concerns about their own risk, and whether, at what age, and from what source their children should be informed about their own risk. Among 267 participants, the average age was 47.5 years; 90% were Caucasian, 7% were African American; 52% had suspected hereditary breast cancer. Of participants with children, 81% indicated concern about their children's breast cancer risk; 55% reported that their children had expressed concern about their own risk. Seventy‐one percent of participants believed the age for informing children about hereditary breast cancer risk to be before 18 years. Eighty‐four percent cited the child's parents and 65% cited health professionals as a preferred information source. No differences in responses between participants with suspected hereditary breast cancer versus presumed sporadic breast cancer were noted. These data establish the need for educational resources regarding hereditary breast cancer for children of early‐onset breast cancer survivors. © 2003 Wiley‐Liss, Inc.