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BMC Medical Informatics and Decision Making

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Open Access 01-12-2021 | Breast Cancer | Research article

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

Authors: Sibylle Kautz-Freimuth, Marcus Redaèlli, Kerstin Rhiem, Andrea Vodermaier, Lisa Krassuski, Kathrin Nicolai, Miriam Schnepper, Violetta Kuboth, Julia Dick, Vera Vennedey, Regina Wiedemann, Rita Schmutzler, Stephanie Stock

Published in: BMC Medical Informatics and Decision Making | Issue 1/2021

Abstract

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.

Available only for authorised users

BRCA-Netzwerk: German self-help organisation (registered association) to support persons with familial cancers, in particular familial breast and ovarian cancer, e.g. due to BRCA1/2 mutations (high-risk or affected persons).

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Title: Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making
Authors: Sibylle Kautz-Freimuth
Marcus Redaèlli
Kerstin Rhiem
Andrea Vodermaier
Lisa Krassuski
Kathrin Nicolai
Miriam Schnepper
Violetta Kuboth
Julia Dick
Vera Vennedey
Regina Wiedemann
Rita Schmutzler
Stephanie Stock
Publication date: 01-12-2021
Publisher: BioMed Central
Keywords: Breast Cancer
Ovarian Cancer
Ovarian Cancer
Breast Cancer
Published in: BMC Medical Informatics and Decision Making / Issue 1/2021
Electronic ISSN: 1472-6947
DOI: https://doi.org/10.1186/s12911-021-01528-4

At a glance: The STEP trials

Springer Medicine

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

Abstract

Background

Methods

Results

Conclusions

At a glance: The STEP trials

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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Psychometric evaluation of a decision quality instrument for medication decisions for treatment of depression symptoms

Applying artificial neural network for early detection of sepsis with intentionally preserved highly missing real-world data for simulating clinical situation

Evaluating the effects of electronic health records system adoption on the performance of Malaysian health care providers