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

Morgan, Debra; Sylvester, Heather; Lucas, F. Lee; Miesfeldt, Susan

doi:10.1097/gim.0b013e3181c60955

Cited by 7 publications

(6 citation statements)

References 18 publications

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“…Some counselee characteristics, like educational level, differed between the two types of clinic studied, although this interaction was more complex than expected. A substantial number of our counselees had a high educational background, which is in accordance with other studies on cancer genetic counseling in the UK (Brain et al 2000), the Netherlands (Van Asperen et al 2002) and the USA (Morgan et al 2010) and on reproductive genetic counseling (Aalfs et al 2007) in the Netherlands.…”

Section: Discussionsupporting

confidence: 66%

Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral

2012

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Both physician and patient play a role in the referral process for cancer genetic counseling. Access to such counseling is not optimal because some eligible patients are not being reached by current referral practice. We aimed to identify factors associated with the initiator of referral. During a 7-month period, we recorded demographic characteristics like gender, personal and family history of cancer, ethnicity and eligibility for genetic testing for 406 consecutive counselees using a specially designed questionnaire. Counselees were seen in a university hospital or a community hospital (n 07) in the Netherlands. We also recorded educational level of each counselee, clinical setting and who initiated referral. Descriptive statistics were used to describe the counselees' general characteristics. We analysed the association between counselee characteristics and the initiator of referral by logistic regression. The majority of counselees seemed to have initiated referral themselves but were indeed eligible for genetic testing. In comparison to the general population in the Netherlands, the counselees had a higher level of education, and there were fewer immigrants, although a higher level of education was not found to be a facilitating factor for referral. The clinical setting where a counselee was seen was associated with initiator of referral, although this relationship was not straightforward. There is a complex interaction between clinical setting and initiator of referral, which warrants further research to elucidate the factors involved in this relationship. Patients seen in cancer genetic counseling do not reflect the general population in terms of educational level or ethnicity.

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Section: Discussionsupporting

confidence: 66%

Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral

2012

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“…A previous study also found that most participants shared their BRCA1 or BRCA2 genetic test results with non-genetics physicians [30]. However, this study was conducted in a community setting in which non-genetics physicians referred their patients to a genetics specialist for genetic counseling and testing, so it is likely that a referring physician would inquire about, and patients would share the results of, genetic testing.…”

Section: Discussionmentioning

confidence: 90%

Communication of BRCA1 and BRCA2 genetic test results to health care providers following genetic testing at a tertiary care center

et al. 2011

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Individuals at high risk for hereditary cancers often receive genetic counseling and testing at tertiary care centers; however, they may receive care for long-term management of their cancer risk in community settings. Communication of genetic test results to health care providers outside of tertiary care settings can facilitate the long-term management of high risk individuals. This study assessed women's communication of BRCA1/BRCA2 genetic test results to health care providers outside of tertiary care settings (termed "outside" health care providers, or OHCPs) and women's perceptions regarding communication of results. Women (n = 312) who underwent BRCA1/BRCA2 genetic counseling and testing completed a questionnaire assessing whether or not they shared test results with OHCPs and perceptions regarding the communication of test results to OHCPs. Most (72%) shared genetic test results with OHCPs. Women with no personal history of cancer were more likely to have shared results compared to women with a personal history of cancer. Mutation status did not significantly predict sharing of genetic information. Most reported positive perceptions regarding the disclosure of genetic test results to OHCPs. The majority did not report any concerns about potential insurance discrimination (88%) and indicated that OHCPs were able to appropriately address their questions (81%). Although most women shared their genetic test results with OHCPs, those with a personal history of cancer may need further encouragement to share this information. Tertiary care centers should facilitate outreach and education with OHCPs in order to assure appropriate long-term cancer risk management for high risk populations.

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“…Healthcare provider referrals seem to have the strongest influence on attending genetic counseling [12]. However, experiences from other countries show that 14–27% of women with HBOC seek genetic counseling without recommendation from medical professionals; data for Germany have not yet been evaluated [13, 14]. …”

Section: Introductionmentioning

confidence: 99%

Familial breast cancer: Genetic counseling over time, including patients´ expectations and initiators considering the Angelina Jolie effect

et al. 2017

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PurposeThe German Consortium for hereditary breast/ovarian cancer (GC-HBOC) aims for nationwide access to professional, individualized yet structured care for families at high risk. The identification of such families remains key for optimal care. Our study evaluates counselees’ characteristics, referral practices, expectations and motivations in respect to their first genetic consultation. The impact of the Angelina Jolie Effect (AJE) was prospectively assessed.MethodsAll counselees could participate through a questionnaire. Groups were built in respect to neoadjuvant chemotherapy (FT) and before/after AJE.ResultsThe 917 (88.5%) counselees (FT: 8.2%) were on average female (97.3%), with a mean age of 44.6, had children (71.9%), higher education (88%), personal (46.4%) or at least one first-degree relative (74.6%) with BC/OC or known BRCA1/2 mutation (11.8%), were in a relationship (76.1%), and living in a village (40.7%). The AJE is associated with significantly fewer cancelations (p = 0.005), more attendance among men (4.2% vs. 0.8%, p = 0.002), and people with familial BRCA1/2 (14.8% vs. 7.5%, p = 0.003). The majority seek information regarding their cancer risk (83%) or relatives’ risk (74.8%), HBOC (69.1%), and surveillance programs for themselves (66.6%) or relatives (60.6%).ConclusionEnhanced media awareness of genetic cancer motivates patients, including other patient groups. A higher number of participants, including more men, are attending GC due to the AJE. In terms of the rising complexity of genetic testing, the analysis of patients’ expectations and initiators for GC suggests that there is an urgent need to develop to participate motivation analysis. The factors revealed as impediments to accessing GC-HBOC guide recommendations to optimize access to genetic counseling. Medical educational programs for primary gynecologists and families at risk might be options to reach more participants.

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

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

Cited by 7 publications

References 18 publications

Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral

Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral

Communication of BRCA1 and BRCA2 genetic test results to health care providers following genetic testing at a tertiary care center

Familial breast cancer: Genetic counseling over time, including patients´ expectations and initiators considering the Angelina Jolie effect

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