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Table 5 Structure and medical content of the DA for survivors with BRCA1/2 mutations following incorporation of the results of the focus group discussions (DA B)

From: Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making

  Topic Content
Information Introduction Addressing the target group and target definition
Notes on authors, funding source and use of the decision aid
(1) Overview Overview of the contents of this decision aid
(2) What does a mutation in the BRCA1 or BRCA2 gene mean? Function of the non-mutated BRCA genes
Significance of hereditary BRCA mutations
Risks of developing contralateral breast cancer and ovarian cancer (lifetime, age- and time-related risks)
each subdivided into BRCA1 and BRCA2 mutations
Personal risk of breast cancer (opposite side, affected side)
Competing risks
(3) Understanding your diagnosis and treatment of breast cancer Information with regard to the affected breast
Stages, types and spread of breast cancer
Potential characteristics of breast cancer for women with BRCA1 and BRCA2 mutations
Basic treatment steps: breast surgery, radiotherapy, medication
(4) What consequences can I expect based on the result of my genetic test? Overview of potential preventive options
Intensified breast cancer screening and aftercare programme:
Aims, reliability, procedure, implementation, pros/cons, overview table
Risk-reducing contralateral mastectomy (of the healthy opposite side):
Effect on risk of developing breast cancer and survival
Forms of mastectomy, pros/cons, overview table
Forms of breast reconstruction, pros/cons, overview table
Risk-reducing removal of both ovaries and Fallopian tubes:
Effect on risk of developing ovarian cancer and survival, surgical procedure, options for relief of menopausal symptoms, pros/cons with overview table
FAQs on other aspects
Support of decision-making (5) How do I work out my own perspective?
A guide to making an informed decision
Worksheet 1: Comparison of preventive options
Worksheet 2: Significance of certain aspects in terms of your own cancer risk (clarifying values and preferences; box-ticking)
Worksheet 3: A step-by-step guide to making your decision
(your situation, clarifying values and preferences; free-form notes)
Worksheet 4: Helping you prepare for your consultation with your doctor
(6) Other helpful information Points of contact for personal advice, self-help
What can I do for myself?
Tips for additional information material
Contact addresses and links
(7) Appendix Fact boxes for women with BRCA1- and BRCA2 mutations:
Average risks of developing contralateral breast cancer:
Lifetime, age and time-related risks
Average risks of developing ovarian cancer:
Lifetime, age and time-related risks
  1. BRCA1 BReast CAncer gene 1, BRCA2 BReast CAncer gene 2, DA decision aid, FAQs frequently asked questions