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1000 Titel
  • Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making
1000 Autor/in
  1. Dr. Kautz-Freimuth, Sibylle |
  2. Redaèlli, Marcus |
  3. Rhiem, Kerstin |
  4. Vodermaier, Andrea |
  5. Krassuski, Lisa |
  6. Nicolai, Kathrin |
  7. Schnepper, Miriam |
  8. Kuboth, Violetta |
  9. Dick, Julia |
  10. Vennedey, Vera |
  11. Wiedemann, Regina |
  12. Schmutzler, Rita |
  13. Stock, Stephanie |
1000 Erscheinungsjahr 2021
1000 Publikationstyp
  1. Artikel |
1000 Online veröffentlicht
  • 2021-06-05
1000 Erschienen in
1000 Quellenangabe
  • 21(1):180
1000 Copyrightjahr
  • 2021
1000 Lizenz
1000 Verlagsversion
  • https://doi.org/10.1186/s12911-021-01528-4 |
  • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8180100/ |
1000 Publikationsstatus
1000 Sprache der Publikation
1000 Abstract/Summary
  • Background!#!Women with pathogenic BRCA1 and BRCA2 mutations possess a high risk of developing breast and ovarian cancer. They face difficult choices when considering preventive options. This study presents the development process of the first decision aids to support this complex decision-making process in the German healthcare system.!##!Methods!#!A six-step development process based on the International Patient Decision Aid Standards was used, including a systematic literature review of existing decision aids, a topical medical literature review, preparation of the decision aids, focus group discussions with women with BRCA1/2 mutations, internal and external reviews by clinical and self-help experts, and user tests. All reviews were followed by iterative revisions.!##!Results!#!No existing decision aids were transferable to the German setting. The medical research revealed a need to develop separate decision aids for women with BRCA1/2 mutations (A) without a history of cancer (previvors) and (B) with a history of unilateral breast cancer (survivors). The focus group discussions confirmed a high level of approval for the decision aids from both target groups. Additionally, previvors requested more information on risk-reducing breast surgery, risk-reducing removal of both ovaries and Fallopian tubes, and psychological aspects; survivors especially wanted more information on breast cancer on the affected side (e.g. biological parameters, treatment, and risk of recurrence).!##!Conclusions!#!In a structured process, two target-group-specific DAs for previvors/survivors with BRCA1/2 mutations were developed to support decision-making on risk-adapted preventive options. These patient-oriented tools offer an important addition to existing specialist medical care in Germany.
1000 Sacherschließung
lokal
lokal BRCA2 Protein/genetics [MeSH]
lokal Genetic Predisposition to Disease [MeSH]
lokal Female [MeSH]
lokal Mutation [MeSH]
lokal Hereditary breast and ovarian cancer
lokal BRCA1 Protein/genetics [MeSH]
lokal Humans [MeSH]
lokal Breast Neoplasms/genetics [MeSH]
lokal Genes, BRCA1 [MeSH]
lokal Genes, BRCA2 [MeSH]
lokal Development process
lokal Decision Support Techniques [MeSH]
lokal Ovarian Neoplasms/prevention
lokal Ovarian Neoplasms/genetics [MeSH]
lokal Preference-sensitive decisions
lokal Preventive options
lokal Germany [MeSH]
lokal Breast Neoplasms/prevention
lokal Clinical decision-making, knowledge support systems, and theory
lokal Decision aids
lokal Research Article
1000 Liste der Beteiligten
  1. https://orcid.org/0000-0002-0753-8490|https://frl.publisso.de/adhoc/uri/UmVkYcOobGxpLCBNYXJjdXM=|https://frl.publisso.de/adhoc/uri/UmhpZW0sIEtlcnN0aW4=|https://frl.publisso.de/adhoc/uri/Vm9kZXJtYWllciwgQW5kcmVh|https://frl.publisso.de/adhoc/uri/S3Jhc3N1c2tpLCBMaXNh|https://frl.publisso.de/adhoc/uri/Tmljb2xhaSwgS2F0aHJpbg==|https://frl.publisso.de/adhoc/uri/U2NobmVwcGVyLCBNaXJpYW0=|https://frl.publisso.de/adhoc/uri/S3Vib3RoLCBWaW9sZXR0YQ==|https://frl.publisso.de/adhoc/uri/RGljaywgSnVsaWE=|https://frl.publisso.de/adhoc/uri/VmVubmVkZXksIFZlcmE=|https://frl.publisso.de/adhoc/uri/V2llZGVtYW5uLCBSZWdpbmE=|https://frl.publisso.de/adhoc/uri/U2NobXV0emxlciwgUml0YQ==|https://frl.publisso.de/adhoc/uri/U3RvY2ssIFN0ZXBoYW5pZQ==
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