A patient decision aid for risk-reducing surgery in premenopausal BRCA1/2 mutation carriers: Development process and pilot testing

作者：Harmsen Marline G.^*; Steenbeek Miranda P.; Hoogerbrugge Nicoline; van Doorn Helena C.; Gaarenstroom Katja N.; Vos M. Caroline; Massuger Leon F. A. G.; de Hullu Joanne A.; Hermens Rosella P. . M. G.

来源：Health Expectations, 2018, 21(3): 659-667.

DOI：10.1111/hex.12661

• ovarian cancer
• patient decision aid
• premature menopause
• salpingectomy
• salpingo-oophorectomy

BackgroundBRCA1/2 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.

• 出版日期2018-6