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.

An iPhone Application Intervention to Promote Surveillance Among Women with a BRCA Mutation: Pre‐intervention Data

“…Evidence suggests an intervention to support BRCA carriers' information needs and assist with tracking surveillance may improve adherence rates (Morgan et al 2010;Tinley et al 2004). The SNAP for BRCA iPhone app was developed for this purpose.…”

“…However, accuracy of recall was positively related to surveillance activities-the more accurately a woman recalled surveillance recommendations, the more likely she was to adhere (Tinley et al 2004). Furthermore, Morgan et al (2010) found adherence to surveillance recommendations was positively associated with a physician reminder.…”

“…The Adherence Determinants Questionnaire (ADQ), loosely based on the Health Belief Model (DiMatteo et al 1993), was used in two studies to explore determinates of nonadherence to cancer surveillance recommendations (Morgan et al 2010;Tinley et al 2004). These studies did not find significant barriers to adherence such as time, cost, location, or ability to make an appointment.…”

Psychological Sequelae of Ovarian Cancer Screening and Genetic Testing for Ovarian Cancer Susceptibility

“…Although RRO dramatically reduces ovarian cancer risk among BRCA1/2 mutation carriers, up to 10% of affected women have difficulty making a decision about surgery [98]. These women face difficult decisions about whether or not to undergo ovarian cancer screening or RRO.…”

“…One strategy found to reduce the psychological impact of genetic testing has been pre-test counselling that promotes women's cognitive-affective processing of cancer risk information [98,112]. These issues point to the need for sufficient information and psychological support for both women and their families.…”