Genetic counseling of patients with ovarian carcinoma: acceptance, timing, and psychological wellbeing

I Van de Beek; E M A Smets; M A Legdeur; J A de Hullu; C A R Lok; M R Buist; M J E Mourits; C M Kets; L E van der Kolk; J C Oosterwijk; C M Aalfs

doi:10.1007/s12687-019-00427-6

Genetic counseling of patients with ovarian carcinoma: acceptance, timing, and psychological wellbeing

J Community Genet. 2020 Apr;11(2):183-191. doi: 10.1007/s12687-019-00427-6. Epub 2019 Jun 5.

Authors

I Van de Beek^{1

2}, E M A Smets^{3

4}, M A Legdeur³, J A de Hullu⁵, C A R Lok⁶, M R Buist⁷, M J E Mourits⁸, C M Kets⁹, L E van der Kolk¹⁰, J C Oosterwijk¹¹, C M Aalfs^{12

3}

Affiliations

¹ Department of Clinical Genetics, Amsterdam UMC, location VUmc, PO Box 7057, 1007 MB, Amsterdam, The Netherlands. i.vandebeek@amc.nl.
² Department of Clinical Genetics, Amsterdam UMC, location AMC, PO Box 22660, 1100 DD, Amsterdam, The Netherlands. i.vandebeek@amc.nl.
³ Department of Clinical Genetics, Amsterdam UMC, location AMC, PO Box 22660, 1100 DD, Amsterdam, The Netherlands.
⁴ Department of Medical Psychology, Amsterdam UMC, location AMC, PO Box 22660, 1100 DD, Amsterdam, The Netherlands.
⁵ Department of Obstetrics and Gynaecology, Radboud University Medical Center, PO Box 9101, 6500 HB, Nijmegen, The Netherlands.
⁶ Department of Obstetrics and Gynaecology, Center of Gynaecologic Oncology Amsterdam, PO Box 90203, 1006 BE, Amsterdam, The Netherlands.
⁷ Department of Obstetrics and Gynaecology, Academic Medical Center, PO Box 22660, 1100 DD, Amsterdam, The Netherlands.
⁸ Department of Obstetrics and Gynaecology, University Medical Center Groningen, University of Groningen, PO Box 30001, 9700 RB, Groningen, The Netherlands.
⁹ Department of Human Genetics, Radboud University Medical Center, PO Box 9101, 6500 HB, Nijmegen, The Netherlands.
¹⁰ Family Cancer Clinic, Netherlands Cancer Institute, PO Box 90203, 1006 BE, Amsterdam, the Netherlands.
¹¹ Department of Genetics, University Medical Center, University of Groningen, PO Box 30001, 9700 RB, Groningen, the Netherlands.
¹² Department of Clinical Genetics, Amsterdam UMC, location VUmc, PO Box 7057, 1007 MB, Amsterdam, The Netherlands.

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.

Keywords: Genetic counseling; Genetic testing; Ovarian carcinoma; Psychological wellbeing.