ArticleHealth expectations : an international journal of public participation in health care and health policy2018
A patient decision aid for risk-reducing surgery in premenopausal BRCA1/2 mutation carriers: Development process and pilot testing.
Article in Health expectations : an international journal of public participation in health care and health policy, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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Who cites it
13 citing papers in PubMed.
- Development of a Decision Aid to Support Shared Decision-Making on Cannabis Use for Arthritis: Protocol for a Multiphase Study.JMIR research protocols · 2026Article
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- Information needs of Lynch syndrome and BRCA 1/2 mutation carriers considering risk-reducing gynecological surgery: a qualitative study of the decision-making process.Hereditary cancer in clinical practice · 2024Article
- Development and early-stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing: A patient-driven approach.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Patient decision support resources inform decisions about cancer susceptibility genetic testing and risk management: a systematic review of patient impact and experience.Frontiers in health services · 2023Review
- Article
- Systematic Development of Patient Decision Aids: An Update from the IPDAS Collaboration.Medical decision making : an international journal of the Society for Medical Decision Making · 2021Article
- Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.BMC medical informatics and decision making · 2021Article
- Decision Aids for Preventive Treatment Alternatives forGeburtshilfe und Frauenheilkunde · 2021Article
- Treatment decisions for patients with peripheral artery disease and symptoms of claudication: Development process and alpha testing of the SHOW-ME PAD decision aid.Vascular medicine (London, England) · 2021Review
- Development and testing of a tailored online fertility preservation decision aid for female cancer patients.Cancer medicine · 2021Article
- Genetic testing for hereditary cancer syndromes: patient recommendations for improved risk communication.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- A patient decision aid for risk-reducing surgery in premenopausal BRCA1/2 mutation carriers: Development process and pilot testing.Health expectations : an international journal of public participation in health care and health policy · 2018Article
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
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