by 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
The Breast: Published: March 29, 2023
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.
