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Abstract
Background BRCA1/2 mutation carriers’ choice between risk‐reducing salpingo‐oophorectomy (RRSO) and salpingectomy with delayed oophorectomy is very complex. Aim was to develop a patient decision aid that combines evidence with patient preferences to facilitate decision making.DesignSystematic development of a patient decision aid in an iterative process of prototype development, alpha testing by patients and clinicians and revisions using International Patient Decision Aid Standards (IPDAS) quality criteria. Information was based on the available literature and current guidelines. A multidisciplinary steering group supervised the process.Setting and participantsPre‐menopausal BRCA1/2 mutation carriers choosing between RRSO and salpingectomy with delayed oophorectomy in Family Cancer Clinics in the Netherlands.Main outcome measuresIPDAS quality criteria, relevance, usability, clarity.ResultsThe patient decision aid underwent four rounds of alpha testing and revisions. Finally, two paper decision aids were developed: one for BRCA1 and one for BRCA2. They both contained a general introduction, three chapters and a step‐by‐step plan containing a personal value clarification worksheet. During alpha testing, risk communication and information about premature menopause and hormone therapy were the most revised items. The patient decision aids fulfil 37 of 43 (86%) IPDAS criteria for content and development process.Discussion and conclusionsBoth BRCA1/2 mutation carriers and professionals are willing to use or offer the developed patient decision aids for risk‐reducing surgery. The patient decision aids have been found clear, balanced and comprehensible. Future testing among patients facing the decision should point out its effectiveness in improving decision making.
Highlights
Women harbouring a germline mutation in the BRCA1 and/or BRCA2 genes have an increased risk of breast and ovarian cancer.[1]
Salpingectomy upon completion of childbearing with delayed oophorectomy has been proposed as alternative strategy to reduce ovarian cancer risk.[7,8,9]
No patient decision aid that includes the relatively new option of salpingectomy with delayed oophorectomy is available to BRCA1/2 mutation carriers, nor in Dutch, nor in English
Summary
Women harbouring a germline mutation in the BRCA1 and/or BRCA2 genes have an increased risk of breast and ovarian cancer.[1]. No patient decision aid that includes the relatively new option of salpingectomy with delayed oophorectomy is available to BRCA1/2 mutation carriers, nor in Dutch, nor in English. OvDex[18] can be personalized depending on age, type of mutation and breast cancer history, this decision aid is already very long with only two options (surgery or no surgery) and only fulfils 4 of 9 International Patient Decision Aid Standards (IPDAS)[19] criteria to lower the risk of making a biased decision. Another decision aid developed by Healthwise[17] is short and convenient. Information on breast surveillance and risk-reducing mastectomy was not included
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