Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy

Miranda P. Steenbeek, Majke H.D. van Bommel*, Marline G. Harmsen, Nicoline Hoogerbrugge, Helena C. van Doorn, José H.M. Keurentjes, Marc van Beurden, Ronald P. Zweemer, Katja N. Gaarenstroom, Charlotte G.J. Penders, Monique M.A. Brood-van Zanten, M. Caroline Vos, Jurgen M. Piek, Luc R.C.W. van Lonkhuijzen, Mirjam J.A. Apperloo, Sjors F.P.J. Coppus, Joanna IntHout, Joanne A. de Hullu, Rosella P.M.G. Hermens

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

3 Citations (Scopus)
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Objective: Risk-reducing surgery is advised to BRCA1/2 pathogenic variant (PV) carriers around the age of 40 years to reduce ovarian cancer risk. In the TUBA-study, a multicenter preference study (NCT02321228), BRCA1/2-PV carriers are offered a choice: the standard strategy of risk-reducing salpingo-oophorectomy or the novel strategy of risk-reducing salpingectomy with delayed oophorectomy. We evaluated feasibility and effectiveness of a patient decision aid for this choice. Methods: Premenopausal BRCA1/2-PV carriers were counselled for risk-reducing surgical options in the TUBA-study; the first cohort was counselled without and the second cohort with decision aid. Evaluation was performed using digital questionnaires for participating women and their healthcare professionals. Outcome measures included actual choice, feasibility (usage and experiences) and effectiveness (knowledge, cancer worry, decisional conflict, decisional regret and self-estimated influence on decision). Results: 283 women were counselled without and 282 women with decision aid. The novel strategy was chosen less frequently in women without compared with women with decision aid (67% vs 78%, p = 0.004). The decision aid was graded with an 8 out of 10 by both women and professionals, and 78% of the women would recommend this decision aid to others. Users of the decision aid reported increased knowledge about the options and increased insight in personal values. Knowledge on cancer risk, decisional conflict, decisional regret and cancer worry were similar in both cohorts. Conclusions: The use of the patient decision aid for risk-reducing surgery is feasible, effective and highly appreciated among BRCA1/2-PV carriers facing the decision between salpingo-oophorectomy or salpingectomy with delayed oophorectomy.

Original languageEnglish
Pages (from-to)371-377
Number of pages7
JournalGynecologic Oncology
Issue number2
Publication statusPublished - 1 Nov 2021

Bibliographical note

Funding Information:
The study was funded by the Dutch Cancer Society , grant KUN 2014-7187 .

Publisher Copyright:
© 2021 The Authors


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