The fulfillment of counselees' expectations in cancer genetic counseling and how this affects the outcome of counseling have received little attention so far. This study investigates how the initial consultation influences counselees' cognitions and anxiety, whether counselors address counselees' prior needs and preferences during the visit, and whether addressing needs is associated with a more positive outcome of the visit. One hundred twenty-eight affected and unaffected counselees from families with no known mutation, who were seen by one of fourteen counselors, participated. Pre- and post-visit questionnaires assessed correct knowledge about hereditary breast or colon cancer, perceived personal control (PPC), anxiety (STAI), risk perceptions, and (fulfillment of) needs (QUOTE-gene(ca)). Results demonstrated a pre- to post-visit significant increase in correct knowledge and PPC, and a significant decrease in STAI and risk perceptions. However, marked overestimation of risks persisted. Decrease in STAI and risk perceptions was significantly less pronounced in affected versus unaffected counselees. The majority of counselees were (very) satisfied about the extent to which their needs were addressed, albeit about one-fifth were not regarding emotional matters and explanations about their own cancer risk. Finally, the better counselees perceived their needs to be fulfilled, the significantly higher their PPC and the significantly lower their STAi scores were. Findings suggest that both unaffected and affected counselees should be counseled carefully. Also, a more effective service may be attained if counselors pay more attention to counselees' emotional needs and detail more inheritance and penetrance of mutated genes in relation to counselees' family history.

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http://dx.doi.org/10.1002/ajmg.a.30839DOI Listing

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Article Synopsis
  • Counseling for familial breast cancer now includes genetic (GENE) and non-genetic factors (NGRF), along with polygenic risk scores (PRS), making risk prediction more complex.
  • A study in Dutch, French, and German genetic clinics involved 22 clinicians and 406 cancer-unaffected women, assessing changes in risk perception with different models of risk factors.
  • Findings showed that clinicians felt less confident when the full risk model indicated lower risk compared to GENE alone, while older counselees reported increased worry and perception of risk when the full model suggested higher risks.
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Purpose: Counselees' preferences are considered important for the choice of risk communication format and for improving patient-centered care. We here report on counselees' preferences for how risks are presented in familial breast cancer counseling and the impact of this preferred format on their understanding of risk.

Patients And Methods: As part of a practice-based randomized controlled trial, 326 unaffected women with a family history of breast cancer received their lifetime risk in one of five presentation formats after standard genetic counseling in three Dutch familial cancer clinics: 1) in percentages, 2) in frequencies ("X out of 100"), 3) in frequencies plus graphical format (10×10 human icons), 4) in frequencies and 10-year age-related risk and 5) in frequencies and 10-year age-related risk plus graphical format.

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Objectives And Setting: Advances in multigene panel testing for cancer susceptibility has increased the complexity of counselling, requiring particular attention to counselees' psychosocial needs. Changes in psychosocial problems before and after genetic testing were prospectively compared between genetic test results in women tested for breast or ovarian cancer genetic susceptibility in French, German and Spanish clinics.

Participants And Measures: Among 752 counselees consecutively approached, 646 (86%) were assessed after the initial genetic consultation (T1), including 510 (68%) affected with breast cancer, of which 460 (61%) were assessed again after receiving the test result (T2), using questionnaires addressing genetic-specific psychosocial problems (Psychosocial Aspects of Hereditary Cancer (PAHC)-six scales).

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We studied counselees' expressed understanding of the risk estimate and surveillance recommendation in the final consultation for breast cancer genetic counseling in relation with their risk perception, worry and cancer surveillance adherence 1 year post-counseling. Consecutive counselees were included from 2008 to 2010. Counselees with an indication for diagnostic DNA-testing for themselves or a breast cancer affected relative were requested to complete online questionnaires before and after counseling and one year after counseling (N = 152-124).

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Background: Sequence-based BRCA testing can identify variants of unknown significance (VUS). Relatively little is known about how well a test outcome of VUS is understood by patients and referring physicians, and whether genetic counselors have an interest in the development of VUS management guidelines.

Design: Self-administered questionnaires were completed by 36 VUS counselees, 75 women with a BRCA mutation and 33 with no mutation found (NMF).

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