The decision aid ‘Preventing ovarian cancer in BRCA mutation carriers’ is made to support women with a BRCA gene mutation in making a well-considered choice: whether they want surgery to reduce their ovarian cancer risk, and if so, what surgery they want.
Medical content
The medical content of this decision aid is based on current scientific knowledge and the "Guideline Hereditary and Familial Ovarian Carcinoma" of the Integral Cancer Center Netherlands.
Those responsible for the medical content are:
Project group
- Dr. J.A. de Hullu, gynaecoloog-oncoloog Radboudumc Nijmegen
- Prof. Dr. R.P.M.G. Hermens, senior onderzoeker / epidemioloog IQ Healthcare Radboudumc Nijmegen
- Dr. M.G. Harmsen, gynaecoloog in opleiding Radboudumc Nijmegen
- Dr. M.P. Steenbeek, arts-onderzoeker en gynaecoloog in opleiding Radboudumc Nijmegen
- Drs. M.H.D. van Bommel, arts-onderzoeker Radboudumc Nijmegen
Steering committee
- Prof. Dr. N. Hoogerbrugge, oncogeneticus Radboudumc Nijmegen
- Dr. J. IntHout, biostatisticus Radboudumc Nijmegen
Expert panel
- Dr. A.M. van Altena, gynaecoloog-oncoloog, Radboudumc Nijmegen
- Dr. M. van Beurden, gynaecoloog-oncoloog, NKI-AvL Amsterdam
- Drs. M.M.A. Brood-van Zanten, arts familiaire gynaecologie, NKI-AvL Amsterdam
- Dr. H.C. van Doorn, gynaecoloog-oncoloog, Erasmus MC Rotterdam
- Dr. K.N. Gaarenstroom, gynaecoloog-oncoloog, LUMC Leiden
- Dr. M.A.P.C. van Ham, gynaecoloog-oncoloog, Radboudumc Nijmegen
- Dr. L.R.C.W. van Lonkhuijzen, gynaecoloog-oncoloog, AMC Amsterdam
- Dr. J.M.J. Piek, gynaecoloog-oncoloog, Catharina ziekenhuis Eindhoven
- Dr. B.F.M. Slangen, gynaecoloog-oncoloog, Maastricht UMC+
- Drs. M.C. Vos, gynaecoloog, Elisabeth-Tweesteden ziekenhuis Tilburg
The content is kept up to date. None of the authors have any conflict of interest. Thus, the decision aid is written by persons who have no interest in the choice of treatment.
- IntegraalKankercentrumNederland. Richtlijn Erfelijk en Familiair Ovariumcarcinoom. versie 1 juni 2015.
- Kuchenbaecker KB, Hopper JL, Barnes DR, Phillips KA, Mooij TM, Roos-Blom MJ, et al. Risks of Breast, Ovarian, and Contralateral Breast Cancer for BRCA1 and BRCA2 Mutation Carriers. Jama. 2017;317(23):2402-16.
- Oei AL, Massuger LF, Bulten J, Ligtenberg MJ, Hoogerbrugge N, de Hullu JA. Surveillance of women at high risk for hereditary ovarian cancer is inefficient. Br J Cancer. 2006;94(6):814-819.
- Domchek SM, Friebel TM, Singer CF, et al. Association of risk-reducing surgery in BRCA1 or BRCA2 mutation carriers with cancer risk and mortality. JAMA. 2010;304(9):967-975.
- Vermeulen RFM, Beurden MV, Korse CM, Kenter GG. Impact of risk-reducing salpingo-oophorectomy in premenopausal women. Climacteric. 2017;20(3):212-221.
- Rocca WA, Gazzuola-Rocca L, Smith CY, et al. Accelerated accumulation of multimorbidity after bilateral oophorectomy: a population-based cohort study. Mayo Clin Proc. 2016;91(11):1577-1589.
- Piek JMJ, van Diest PJ, Zweemer RP, et al. Dysplastic changes in prophylactically removed Fallopian tubes of women predisposed to developing ovarian cancer. J Pathol. 2001;195(4): 451-456.
- Labidi-Galy SI, Papp E, Hallberg D, et al. High grade serous ovarian carcinomas originate in the fallopian tube. Nat Commun. 2017;8(1):1093.
- Harmsen MG, IntHout J, Arts-de Jong M, Hoogerbrugge N, Massuger LF, Hermens RP, et al. Salpingectomy with delayed oophorectomy in BRCA1/2 mutation carriers: estimating ovarian cancer risk. Obstetrics and Gynecology 2016;127(6):1054-63
Development, research and implementation
The decision aid has been approved by the Dutch patient association (Stichting Erfelijke Kanker Nederland, formerly Oncogen) and the patient advisory board of the Radboudumc. The development of this decision aid has taken place according to the International Quality Standard IPDAS: International Patient Decision Aid Standards.
For the development of the decision aid, a national expert panel and a steering committee were established, led by a physician, gynecologic oncologist and expert in the field of joint decision-making and implementation of guidelines (Dr. Harmsen, Dr. de Hullu and Prof. Dr. Hermens). The expert panel and the steering committee, led by the project group, are responsible for the medical content of this decision aid. Patients and members of the patients' association Stichting Erfelijke Kanker (Hereditary Cancer Foundation) and the patients' advisory board of the Radboudumc were also involved in the development of this decision aid.
In 2021 the decision aid is made available digitally. To this end, the medical content has been updated on the basis of the latest scientific knowledge and the text has been made easier to read. This update was performed under the direction of Dr. de Hullu and Prof. Dr. Hermens.
- Harmsen MG, Steenbeek MP, Hoogerbrugge N, van Doorn HC, Gaarenstroom KN, Vos MC, et al. A patient decision aid for risk-reducing surgery in premenopausal BRCA1/2 mutation carriers: Development process and pilot testing. Health Expect. 2018;21(3):659-67
- Steenbeek MP, van Bommel MHD, Harmsen MG, et al. Evaluation of a patient decision aid for BRCA1/2 pathogenic variant carriers choosing an ovarian cancer prevention strategy. Gynecol Oncol. 2021;163:371-377.
Funding
This decision aid was developed with funding from the Dutch Cancer Society (KWF).
Last update
27 January 2022
