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Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making
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 pro...
Autores principales: | , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8180100/ https://www.ncbi.nlm.nih.gov/pubmed/34090422 http://dx.doi.org/10.1186/s12911-021-01528-4 |
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author | Kautz-Freimuth, Sibylle Redaèlli, Marcus Rhiem, Kerstin Vodermaier, Andrea Krassuski, Lisa Nicolai, Kathrin Schnepper, Miriam Kuboth, Violetta Dick, Julia Vennedey, Vera Wiedemann, Regina Schmutzler, Rita Stock, Stephanie |
author_facet | Kautz-Freimuth, Sibylle Redaèlli, Marcus Rhiem, Kerstin Vodermaier, Andrea Krassuski, Lisa Nicolai, Kathrin Schnepper, Miriam Kuboth, Violetta Dick, Julia Vennedey, Vera Wiedemann, Regina Schmutzler, Rita Stock, Stephanie |
author_sort | Kautz-Freimuth, Sibylle |
collection | PubMed |
description | 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12911-021-01528-4. |
format | Online Article Text |
id | pubmed-8180100 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-81801002021-06-07 Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making Kautz-Freimuth, Sibylle Redaèlli, Marcus Rhiem, Kerstin Vodermaier, Andrea Krassuski, Lisa Nicolai, Kathrin Schnepper, Miriam Kuboth, Violetta Dick, Julia Vennedey, Vera Wiedemann, Regina Schmutzler, Rita Stock, Stephanie BMC Med Inform Decis Mak Research Article 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12911-021-01528-4. BioMed Central 2021-06-05 /pmc/articles/PMC8180100/ /pubmed/34090422 http://dx.doi.org/10.1186/s12911-021-01528-4 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Article Kautz-Freimuth, Sibylle Redaèlli, Marcus Rhiem, Kerstin Vodermaier, Andrea Krassuski, Lisa Nicolai, Kathrin Schnepper, Miriam Kuboth, Violetta Dick, Julia Vennedey, Vera Wiedemann, Regina Schmutzler, Rita Stock, Stephanie Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making |
title | Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making |
title_full | Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making |
title_fullStr | Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making |
title_full_unstemmed | Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making |
title_short | Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making |
title_sort | development of decision aids for female brca1 and brca2 mutation carriers in germany to support preference-sensitive decision-making |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8180100/ https://www.ncbi.nlm.nih.gov/pubmed/34090422 http://dx.doi.org/10.1186/s12911-021-01528-4 |
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