Perceptions of high-risk care and barriers to care among women at risk for hereditary breast and ovarian cancer following genetic counseling in the community setting

Abstract

Data are limited regarding barriers to care among women, with or at risk for hereditary breast and ovarian cancer (HBOC), following genetic counseling in the community setting. Using a telephone survey, we retrospectively addressed perceptions of post-genetic counseling medical care and barriers to care among 69 at-risk women from the non-academic setting. Of these, all agreed that following cancer screening recommendations was better than not following them; none felt recommendations were too difficult to follow; all believed screening would help keep them healthy; 57% believed screening would prevent cancer. Twenty-five percent noted discomfort with breast imaging; 29% found ovarian cancer screening uncomfortable. Close to a quarter of participants reported difficulty deciding whether or not to undergo risk-reducing mastectomy while 10% noted difficulty deciding for or against bilateral salpingo-oophorectomy. There were no perceived major barriers to care, although 38% felt that screening reminders would be helpful, and 10% needed more help in following through with care. Overall, participants believed that they were benefiting from their post-genetic counseling medical care. This work identified HBOC-related support needs to include: informational resources that promote improved understanding of cancer risk and high-risk management; screening reminder systems; and decision support tools. © 2009 National Society of Genetic Counselors, Inc.