title: 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.
authors.affiliation: Maine Medical Center Research Institute, Scarborough, ME, USA.
authors.forename: Debra
authors.initials: D
authors.lastname: Morgan
authors.forename: Heather
authors.initials: H
authors.lastname: Sylvester
authors.forename: F Lee
authors.initials: FL
authors.lastname: Lucas
authors.forename: Susan
authors.initials: S
authors.lastname: Miesfeldt
mesh_terms: D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000235:genetics*; D003153:Community Health Services; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling; D006801:Humans; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics*; D017354:Point Mutation / Q000235:genetics; D012307:Risk Factors; D014932:Women's Health Services / Q000706:statistics & numerical data*; D055815:Young Adult