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
Affiliations
K. Bokkers
Division Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX, Utrecht, the Netherlands
E.M.A. Bleiker
Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands; Family Cancer Clinic, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands; Department of Clinical Genetics, Leiden University Medical Center, Albinusdreef 2, 2333 ZA, Leiden, the Netherlands
M.E. Velthuizen
Division Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX, Utrecht, the Netherlands
R. Koelemij
Department of Surgery, St. Antonius Hospital, Soestwetering 1, 3543 AZ, Utrecht, the Netherlands
J.P.J. Burgmans
Department of Surgery, Diakonessenhuis, Bosboomstraat 1, 3582 KE, Utrecht, the Netherlands
J.H. Klinkenbijl
Department of Surgery, Gelre Hospitals, Albert Schweitzerlaan 31, 7334 DZ, Apeldoorn, the Netherlands
A.P. Schouten van der Velden
Department of Surgery, St. Jansdal Hospital, Wethouder Jansenlaan 90, 3844 DG, Harderwijk, the Netherlands
N. Vermulst
Department of Surgery, St. Antonius Hospital, Soestwetering 1, 3543 AZ, Utrecht, the Netherlands; Department of Surgery, Rivierenland Hospital, President Kennedylaan 1, 4002 WP, Tiel, the Netherlands
B.F. Huizinga
Department of Surgery, Alexander Monro Hospital, Professor Bronkhorstlaan 10, 3727 MB, Bilthoven, the Netherlands
A.J. Witkamp
Department of Surgery, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX, Utrecht, the Netherlands
T. Frakking
Department of Surgery, Beatrix Hospital, Banneweg 57, 4204 AA, Gorinchem, the Netherlands
R.M. Brohet
Department of Epidemiology and Statistics, Isala Hospital, Dokter van Heesweg 2, 8025 AB, Zwolle, the Netherlands
C.M. Aalfs
Division Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX, Utrecht, the Netherlands
W. Koole
Division Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX, Utrecht, the Netherlands
E.J.P. Schoenmaeckers
Department of Surgery, Meander Medical Center, Maatweg 3, 3813 TZ, Amersfoort, the Netherlands
M.G.E.M. Ausems
Division Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX, Utrecht, the Netherlands; Corresponding author.
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.
