Abstract
The new Dutch guidelines on hereditary and familial ovarian carcinoma recommend genetic testing of all patients with epithelial ovarian cancer (EOC). With this study, we aimed to obtain insight into (1) the acceptance and timing of the offer of genetic counseling in women with EOC, (2) reasons for accepting or declining genetic counseling, and (3) psychological differences between women who did and did not have genetic counseling. A multicenter questionnaire survey was performed in patients with EOC in four Dutch oncology centers. The questionnaire addressed whether, how, and when genetic counseling was offered, women’s arguments to accept or decline genetic counseling, and included the Cancer Worry Scale (CWS) and the Hospital Anxiety and Depression Scale (HADS). A total of 67 women completed the questionnaire, of which 43 had genetic counseling. Despite a wide variability in the timing of the offer of genetic counseling, 89% of the women were satisfied with the timing. No significant differences were found between the CWS and HADS scores for the timing of the offer of genetic counseling and whether or not women had genetic counseling. Taking the small sample size into account, the results tentatively suggest that genetic counseling may have limited impact on the psychosocial wellbeing of women with EOC. Therefore, we assume that implementation of the new guidelines offering genetic counseling to all patients with EOC will not cause considerable additional burden to these patients.
Highlights
Epithelial ovarian, peritoneal, and fallopian tube carcinoma (EOC) is the seventh most common cancer affecting women worldwide
A majority of serous epithelial ovarian cancer (EOC) appears to originate from dysplastic lesions in the distal fallopian tube; ongoing studies will demonstrate whether salpingectomy leads to delayed choice for oophorectomy (Erickson et al 2013)
No difference was found in psychological distress between women who received genetic counseling and those who had not received genetic counseling
Summary
Epithelial ovarian, peritoneal, and fallopian tube carcinoma (EOC) is the seventh most common cancer affecting women worldwide. In the Netherlands, 1200 to 1300 women are diagnosed with EOC every year (Dutch Cancer Registry 2015). Identification of a germline mutation facilitates the identification of healthy family members with a mutation in EOC susceptibility genes. In these individuals, prevention of EOC and related types of cancer can be lifesaving. In patients with EOC, a substantial part of the germline BRCA1/2 mutation carriers are missed when applying criteria for genetic testing, such as age of onset, family history, and histology (Arts-de Jong et al 2016). The recently accepted Dutch guidelines on EOC recommend genetic counseling and the offer of a DNA test for BRCA1 and BRCA2 to all patients with EOC, irrespective of histology, family history, or age at diagnosis. The lack of a correlation between the acceptance rate and time since diagnosis suggests that timing did not influence the uptake of genetic counseling (Dekker et al 2013)
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