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Table 3 Basic medical contents of the identified DAs

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

DA: Author/developer, year of publication [reference] Kurian, 2011 [58] Metcalfe, 2006 [57] Hereditary Cancer Clinic et al, 2012### [64] Healthwise, 2016# [61] Mayo Clinic, 2016# [59] Cardiff University, 2014## [62, 63] Mayo Clinic, 2014# [60]
Format Online tool for individualisation Brochure/PDF Brochure/PDF Online text Online text Online tool for individualisation Online text
Target group Women with BRCA1/2 mutations; differentiation between BRCA1and BRCA2 mutation
Not affected by cancer (previvors)
Women with BRCA1/2 mutations; no differentiation between BRCA1and BRCA2 mutation
Not affected by cancer (previvors)
Women with a strong family history of breast cancer and
-BRCA1/2 mutations
-Personal history of unilateral breast cancer
-Personal history of multiple breast biopsies
-Breast cancer anxiety
Women at high risk for breast cancer with
-Family history of breast cancer
-BRCA1/2 mutations
Women at increased risk for breast cancer with
-Personal history of unilateral breast cancer
-Family history of breast cancer
-BRCA1/2 mutations
-Personal history of LCIS
-Personal history of radiotherapy at the age of 10 to 30
-Dense breast tissue
Women at increased risk of ovarian cancer with
-BRCA1or BRCA2 mutations
-Being from a Lynch syndrome family
-No genetic test
-Uninformative genetic test
-Negative genetic test
Women at increased risk of ovarian cancer with
-BRCA1 or BRCA2 mutations
-Strong family history of breast cancer and ovarian cancer without known genetic alteration
-Strong likelihood of gene mutation, but no genetic testing
Addressed cancer risk Breast cancer riska
Ovarian cancer riska
Breast cancer risk Breast cancer risk Breast cancer risk Breast cancer risk Ovarian cancer riskb Ovarian cancer risk
Information on cancer risks        
Lifetime risks of breast cancer        
No mutation§ 10–12 of 100 11 of 100 8 of 100 12 of 100 0 0 0
BRCA1 mutation 47–85 of 100 0 0 55–65 of 100 0 Xc 0
BRCA2 mutation 40–85 of 100 0 0 45 of 100 0 Xc 0
BRCA1/2 mutation 0 80 of 100 0 40–85 of 100 0 0 0
Risks of contralateral breast cancer        
No mutation§ 0 0 0 0 0 0 0
BRCA1 mutation 0 0 0 0 0 0 0
BRCA2 mutation 0 0 0 0 0 0 0
BRCA1/2 mutation 0 0 0 0 0 0 0
Lifetime risks of ovarian cancer        
No mutation§ 1–2 of 100 0 0 0 0 0 0
BRCA1 mutation 39–46 of 100 0 0 0 0 Xc 0
BRCA2 mutation 11–27 of 100 0 0 0 0 Xc 0
BRCA1/2 mutation 0 40 of 100 0 0 0 0 0
Further risk information        
Time-related risks 0 0 (X)d 0 0 0 0
Age-related risks 0 0 (X)d 0 0 (X)d 0
Competing risks 0 0 0 0 0 0 0
Information on preventive measures -
breast cancer
       
Intensified screening        
Self-examinationy 0 X (X)e 0 X 0 0
Medical examination 0 X (X)e (X)f X 0 0
Breast MRI X X X X X 0 Xg
Mammography X X X X X 0 Xg
Breast ultrasound 0 0 X 0 0 0 0
Risk-reducing surgery        
Mastectomy Xh Xh Xi Xh Xi 0 Xh
Salpingo-oophorectomyy Xj X 0 X 0 Xm 0
Oophorectomyy Xk 0 0 Xl X 0 X
Preventive medicationy        
Tamoxifen 0 X 0 Xn X 0 0
Raloxifen 0 (X)o 0 Xp Xp 0 0
Aromatase inhibitors 0 (X)o (X)q Xp Xp 0 0
Other        
No oral contraceptiony 0 0 X 0 0 X X
No hormone replacement therapyy 0 0 X 0 (X)r Xs Xt
Information on preventive measures -ovarian cancer        
Screeningy        
Transvaginal ultrasound 0 0 0 0 0 (X)u (X)v
CA125 testing 0 0 0 0 0 (X)u (X)v
Risk-reducing surgery        
Salpingo-oophorectomy Xj Xw 0 X 0 X X
Oophorectomyy Xk 0 0 X X 0 0
Other        
Oral contraception 0 0 0 0 0 X X
Hormone replacement therapyy 0 0 0 Xx 0 X X
Further information        
Breast surgery, breast reconstruction 0 0 X 0 0 0 0
Adnexa surgery 0 0 0 0 0 0 0
  1. BRCA1/2: BReast CAncer gene 1 and 2; DA: decision aid; LCIS: lobular carcinoma in situ; MRI: magnetic resonance imaging; previvors: women with pathogenic BRCA1or BRCA2 mutations without a personal history of cancer
  2. X: Yes, (X): Yes, but with limitation; 0: No/not applicable
  3. #Current version dated 2019 available
  4. ##Example online version of the DA no longer available
  5. ###Developers: Hereditary Cancer Clinic, Prince of Wales Hospital, Centre for genetics education, NSW Health, Royal north shore hospital
  6. §No mutation: general population
  7. aCalculates average rates for mortality and survival after inputting patient characteristics and planned preventive option(s), compares to "no preventive intervention" and "no mutation"
  8. bProvides individualized information after inputting personal risk characteristics, age and personal history of breast cancer
  9. cStates risk rates for individualised situation (applicable mutation, cancer history, woman’s age)
  10. dExample information on age and/or time-related risk of disease
  11. eStates on p. 6: "regular breast examinations" (self/medical examination not specified)
  12. f"checkups 1 to 2 times a year", not specified which kind of examination is meant
  13. g Briefly mentioned in the chapter "Why might a woman opt for oophorectomy over mastectomy?"
  14. hBilateral mastectomy for reduction of breast cancer risk
  15. iUnclear as to whether unilateral or bilateral mastectomy is meant
  16. jThe term salpingo-oophorectomy is used in the DA glossary
  17. k The term oophorectomy is used in the DA tool
  18. lStates that oophorectomy reduces the risk of breast cancer in women at high risk of breast cancer
  19. mBriefly mentioned on p. 9
  20. nStates that tamoxifen is most helpful for women under 50 years of age
  21. oStates on p. 2: "medications are being studied for breast cancer prevention"
  22. pFor post-menopausal women
  23. qStates that an international study examines the effect of anastrozole on preventing breast cancer in high-risk post-menopausal women
  24. rAvoidance of hormone replacement therapy in post-menopause
  25. sNo increase in breast cancer risk if hormone replacement therrapy is stopped after menopause
  26. tStates that after surgically induced menopause younger women should consider short-term hormone replacement therapy up to the age of 50 to 52
  27. uStates that there is no evidence that screening leads to early diagnosis
  28. vStates that there is no evidence that screening saves lives
  29. wMentioned in the appendix
  30. xStates that in case of serious symptoms following removal of ovaries, women might consider to talk with the doctor about taking a short course of hormone therapy
  31. yNot recommended/no clear statement as primary preventive measure in women with BRCA1/2 mutations by the German S3 and S2 guidelines [8, 9, 14]