Pre‐test genetic counseling services for hereditary breast and ovarian cancer delivered by non‐genetics professionals in the state of Florida

Abstract

Genetic counseling and testing for hereditary breast and ovarian cancer now includes practitioners from multiple healthcare professions, specialties, and settings. This study examined whether non-genetics professionals (NGPs), perform guideline-based patient intake and informed consent before genetic testing. NGPs offering BRCA testing services in Florida (n = 386) were surveyed about clinical practices. Among 81 respondents (response rate = 22%), approximately half reported: sometimes scheduling a separate session for pretest counseling lasting 11–30 minutes prior to testing, discussing familial implications of testing, benefits and limitations of risk management options, and discussing the potential psychological impact and insurance related issues. Few constructed a three-generation pedigree, discussed alternative hereditary cancer syndromes, or the meaning of a variant result. This lack of adherence to guideline based practice may result in direct harm to the patients and their family members. NGPs that are unable to deliver guideline adherent cancer genetics services should focus on identification and referral of at-risk patients to in person or telephone services provided by genetics professionals.

Differences in BRCA counseling and testing practices based on ordering provider type

“…These results may be contrasted with findings from our 2012 survey of 81 non-GHPs in which the majority of providers reported GC sessions of 30 minutes or less with many reporting limited or no discussion of recommended pre-test elements. 24 Thus, our recent provider level data is consistent with findings from the current study where over 40% of participants tested by non GHPs did not recall having had pre-test GC. However, our data also suggest that many non GHPs are performing pre-test counseling that includes discussion of many nationally recommended GC elements.…”

Randomized Noninferiority Trial of Telephone Delivery of BRCA1/2 Genetic Counseling Compared With In-Person Counseling: 1-Year Follow-Up

“…17, 76 The small number of women who obtained genetic testing limits our ability to draw meaningful conclusions about the noninferiority of telephone counseling for risk management outcomes. Because our sample was from a single state, was largely non-Hispanic white, and had a personal history of cancer, our study may have limited generalizability.…”

Primary care providers’ cancer genetic testing-related knowledge, attitudes, and communication behaviors: A systematic review and research agenda

“…31,33,34,39,41,45,52,54,57 Of these, four studies provided descriptive information about PCPs' experiences discussing genetic risk and testing (2 relying on surveys in the breast cancer context 41,45 and 1 using mixed-methods in the prostate cancer context 33 ). The other used a novel study design featuring standardized patients to evaluate communication behaviors among 86 providers and found that in only 21% and 3% of encounters did providers express opinions suggesting that patients at high maternal or paternal breast cancer risk, respectively, were candidates for genetic testing.…”

“…The other used a novel study design featuring standardized patients to evaluate communication behaviors among 86 providers and found that in only 21% and 3% of encounters did providers express opinions suggesting that patients at high maternal or paternal breast cancer risk, respectively, were candidates for genetic testing. 34 Two additional studies used cross-sectional surveys to assess the extent to which PCPs adhered to clinical guidelines in discussions about consenting to hereditary breast and ovarian cancer testing 39,54 and observed that many were non-adherent (e.g., among 81 providers, 39% did not always discuss implications for family, and 64% did not always discuss the possibility of another hereditary cancer syndrome 54 ). Furthermore, two studies reported limited instances of discussions between PCPs and patients regarding direct-to-consumer testing (e.g., with 71% 45 to 92% 33 of providers not having had a patient ask questions about direct-to-consumer testing).…”