Breast (Jun 2023)

Patients’ experiences with pre-test genetic counseling provided by breast cancer healthcare professionals: Results from a large prospective multicenter study

  • K. Bokkers,
  • E.M.A. Bleiker,
  • M.E. Velthuizen,
  • R. Koelemij,
  • J.P.J. Burgmans,
  • J.H. Klinkenbijl,
  • A.P. Schouten van der Velden,
  • N. Vermulst,
  • B.F. Huizinga,
  • A.J. Witkamp,
  • T. Frakking,
  • R.M. Brohet,
  • C.M. Aalfs,
  • W. Koole,
  • E.J.P. Schoenmaeckers,
  • M.G.E.M. Ausems

Journal volume & issue
Vol. 69
pp. 349 – 357

Abstract

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Background: Pre-test genetic counseling of patients with breast cancer is increasingly being offered by non-genetic healthcare professionals. We aimed to evaluate the experiences of patients with breast cancer receiving pre-test genetic counseling from a non-genetic healthcare professional (i.e., surgeon or nurse). Methods: Patients who were diagnosed with breast cancer and received pre-test counseling from their surgeon or nurse (mainstream group), and patients who received pre-test counseling from a clinical geneticist (usual care group) were invited to participate in our multicenter study. Between September 2019 and December 2021, patients received a questionnaire after pre-test counseling (T0) and four weeks after receiving their test results (T1) to evaluate psychosocial outcomes, knowledge, discussed topics and satisfaction. Results: We included 191 patients in our mainstream and 183 patients in our usual care group and received, respectively 159 and 145 follow-up questionnaires. Levels of distress and decisional regret were comparable in both groups. Decisional conflict was higher in our mainstream group (p = 0.01), but only 7% had clinically relevant decisional conflict (vs 2% in usual care group). The possible implications of a genetic test on (secondary) breast or ovarian cancer risks were less frequently discussed in our mainstream group (p = 0.03 and p = 0.000, respectively). In both groups knowledge about genetics was comparable, satisfaction was high and the majority of patients in both groups preferred to give both verbal and written consent for genetic testing. Conclusion: Mainstreamed genetic care provides sufficient information for the majority of breast cancer patients to decide about genetic testing with minimal distress.

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