Hereditary breast and ovarian cancer: referral source for genetic assessment and communication regarding assessment with nongenetic clinicians in the community setting.

Document Type


Publication Date



Maine Medical Center Research Institute

Journal Title

Genetics in medicine : official journal of the American College of Medical Genetics

MeSH Headings

Adult, Aged, BRCA1 Protein, BRCA2 Protein, Breast Neoplasms, Community Health Services, Documentation, Educational Status, Female, Genetic Counseling, Genetic Predisposition to Disease, Health Surveys, Humans, Income, Middle Aged, Mutation, Ovarian Neoplasms, Referral and Consultation, Retrospective Studies, Telephone


PURPOSE: To examine referral source to cancer genetic services; communication of results of genetic evaluation to clinicians; role of clinicians in postcounseling management; and use of alternative information sources after cancer genetic risk assessment/counseling in the community setting.

METHODS: Retrospective telephone survey.

SETTING: A community/private hospital-based cancer genetic counseling service.

PATIENTS: Women, at least 21 years of age, who had undergone cancer genetic counseling with (1) at least a 10% predicted likelihood of carrying a BRCA1/2 mutation or (2) a documented BRCA1/2 mutation.

INTERVENTION: A 121-item telephone survey.

MAIN OUTCOME MEASURE: (1) initial referral source to cancer genetic services; (2) women's communication of results of cancer genetic assessment to primary and (nongenetic) specialist clinician(s); (3) education and support role played by subjects' physician(s); and (4) use of other hereditary breast and ovarian cancer (HBOC) information resources.

RESULTS: Of 225 women eligible for study, 69 (31%) completed the survey. Sixty-two percent were referred by their medical oncologist; 13% by their primary care physician, and fewer by their surgeon (6%) or gynecologist (4%). Results of the cancer genetic assessment were not shared with 19% of primary care clinicians, 26% of primary gynecologists, 12% of oncologists, and 36% of surgeons. Twenty-six percent of participants noted that their primary care clinician had not been involved in their HBOC-related, cancer prevention decisions, 16% had not included their gynecologist, 2% had not involved their oncologist, and 20% replied that their surgeon had not been involved in these decisions. Overall, clinicians were perceived as supportive when it came to a participants' information and decision support needs. One exception was that 21% of respondents reported the use by clinicians of medical terms, without definition. Over two-thirds had sought alternative "self-help" HBOC-related materials, most Internet based.

CONCLUSIONS: These results have implications for interdisciplinary communication and decision support for those with or at risk for HBOC, cared for in the community setting.



First Page


Last Page