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Table 4 Structure and medical content of the DA for previvors with BRCA1/2 mutations following incorporation of the results of the focus group discussions (DA A)

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

Average risks of breast cancer and ovarian cancer each subdivided into BRCA1 and BRCA2 mutations

Personal risk of breast cancer and ovarian cancer

(3) What consequences can I expect based on the result of my genetic test?

Overview of potential preventive options

Intensified breast cancer screening programme:

Aims, reliability, procedure, implementation, pros/cons, overview table

Risk-reducing bilateral mastectomy:

Effect on risk of developing breast cancer

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, option for hormone replacement therapy, pros/cons, overview table

FAQs on other aspects

Support of decision-making

(4) 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

(5) Other helpful information

Points of contact for personal advice, self-help

What can I do for myself?

Tips for additional information material

Glossary

Contact addresses and links

References

(6) Appendix

Fact boxes for women with BRCA1 and BRCA2 mutations:

Average risks of developing breast cancer:

Lifetime, age and time-related (10 year) risks

Average risks of developing ovarian cancer:

Lifetime, age and time-related (10-year) risks

  1. BRCA1 BReast CAncer gene 1, BRCA2 BReast CAncer gene 2, DA decision aid, FAQs frequently asked questions