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Multicenter Study
. 2023 Jun:69:349-357.
doi: 10.1016/j.breast.2023.03.017. Epub 2023 Mar 29.

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

K Bokkers  1 , E M A Bleiker  2 , M E Velthuizen  1 , R Koelemij  3 , J P J Burgmans  4 , J H Klinkenbijl  5 , A P Schouten van der Velden  6 , N Vermulst  7 , B F Huizinga  8 , A J Witkamp  9 , T Frakking  10 , R M Brohet  11 , C M Aalfs  1 , W Koole  1 , E J P Schoenmaeckers  12 , M G E M Ausems  13
Affiliations
Multicenter Study

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

K Bokkers et al. Breast. 2023 Jun.

Abstract

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.

Keywords: Breast cancer; Genetic counseling; Mainstream genetic testing; Patients' perspectives; Psychosocial outcomes; Satisfaction.

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Conflict of interest statement

Declarations of competing interest The authors have no conflicts of interest to declare.

Figures

Fig. 1
Fig. 1
Mainstream and usual genetic care pathways for breast cancer patients including response rates. GP: general practitioner, HCP: healthcare professional.
Fig. 2A
Fig. 2A
Discussed topics during pre-test counseling for the mainstream and usual care group. Patients were asked whether one or more of these topics were discussed. For every topic, the percentage of patients who said that it was discussed is displayed in this bar chart. *p < 0.05. Fig. 2b. Topics that patients in the mainstream and usual care group considered most important. Patients were asked to select the topic they considered most important. For every topic, the percentage of patients who said it was most important is displayed. If patients selected more than one topic, both were included in the bar chart. *p < 0.05.
Fig. 2A
Fig. 2A
Discussed topics during pre-test counseling for the mainstream and usual care group. Patients were asked whether one or more of these topics were discussed. For every topic, the percentage of patients who said that it was discussed is displayed in this bar chart. *p < 0.05. Fig. 2b. Topics that patients in the mainstream and usual care group considered most important. Patients were asked to select the topic they considered most important. For every topic, the percentage of patients who said it was most important is displayed. If patients selected more than one topic, both were included in the bar chart. *p < 0.05.
See this image and copyright information in PMC

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