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A patient decision aid for risk-reducing surgery in premenopausal BRCA1/2 mutation carriers: Development process and
Marline G Harmsen1, Miranda P Steenbeek1, Nicoline Hoogerbrugge2
1Department of Obstetrics and Gynaecology, Radboud University Medical Center, Nijmegen, The Netherlands.
Summary
BRCA1/2 mutation carriers now have a patient decision aid to help choose between risk-reducing salpingo-oophorectomy (RRSO) and salpingectomy with delayed oophorectomy. This tool combines evidence and patient preferences for informed decision-making regarding cancer risk reduction.
Area of Science:
- Oncology
- Genetics
- Decision Science
Background:
- BRCA1/2 mutation carriers face complex choices regarding risk-reducing surgeries.
- Options include risk-reducing salpingo-oophorectomy (RRSO) and salpingectomy with delayed oophorectomy.
- Facilitating informed decision-making is crucial for this patient group.
Purpose of the Study:
- To develop a patient decision aid for BRCA1/2 mutation carriers.
- The aid aims to integrate scientific evidence with patient preferences.
- To support decision-making for risk-reducing surgical options.
Main Methods:
- Systematic development using an iterative process of prototype development and alpha testing.
- Revisions were guided by International Patient Decision Aid Standards (IPDAS) quality criteria.
- Information synthesized from current literature and clinical guidelines.
Main Results:
- Two paper-based decision aids were developed (one for BRCA1, one for BRCA2) after four rounds of testing and revision.
- The aids include general information, structured chapters, and a value clarification worksheet.
- The decision aids met 86% of IPDAS quality criteria, with specific improvements in risk communication and information on menopause and hormone therapy.
Conclusions:
- Developed patient decision aids are considered clear, balanced, and comprehensible by both patients and professionals.
- Both groups express willingness to use the decision aids for risk-reducing surgery.
- Further research is needed to evaluate the effectiveness of these aids in improving patient decision-making outcomes.
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