Evidence map›Paper›PMID 34090422›Full record

ArticleBMC medical informatics and decision making2021

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

Sibylle Kautz-Freimuth, Marcus Redaèlli, Kerstin Rhiem, Andrea Vodermaier, Lisa Krassuski, Kathrin Nicolai, Miriam Schnepper, Violetta Kuboth, Julia Dick, Vera Vennedey and 3 more

Open access · goldAbstract read
In one paragraph

Article in BMC medical informatics and decision making, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
17citing papers in PubMed, 3 pooled it
4.2field-weighted citation impact, top 6% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

17 citing papers in PubMed, 3 syntheses or guidelines pooled it, 27 citations in OpenAlex.

  1. Pooled it
  2. Assessing Psychological Morbidity in Cancer-UnaffectedCurrent oncology (Toronto, Ont.) · 2023
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  17. Decision Aids for Preventive Treatment Alternatives forGeburtshilfe und Frauenheilkunde · 2021
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors at 3 institutions in 2 countries.

Sibylle Kautz-FreimuthInstitute for Health Economics and Clinical Epidemiology, The University Hospital of Cologne, Gleueler Straße 176-178, 50935, Cologne, Germany. sibylle.kautz-freimuth@uk-koeln.de.ORCID 0000-0002-0753-8490
Marcus RedaèlliInstitute for Health Economics and Clinical Epidemiology, The University Hospital of Cologne, Gleueler Straße 176-178, 50935, Cologne, Germany.
Kerstin RhiemCentre for Familial Breast and Ovarian Cancer, Centre for Integrated Oncology (CIO), Faculty of Medicine, University of Cologne, University Hospital of Cologne, Kerpener Straße 62, 50937, Cologne, Germany.
Andrea VodermaierInstitute for Health Economics and Clinical Epidemiology, The University Hospital of Cologne, Gleueler Straße 176-178, 50935, Cologne, Germany.
Lisa KrassuskiInstitute for Health Economics and Clinical Epidemiology, The University Hospital of Cologne, Gleueler Straße 176-178, 50935, Cologne, Germany.
Kathrin NicolaiInstitute for Health Economics and Clinical Epidemiology, The University Hospital of Cologne, Gleueler Straße 176-178, 50935, Cologne, Germany.
Miriam SchnepperInstitute for Health Economics and Clinical Epidemiology, The University Hospital of Cologne, Gleueler Straße 176-178, 50935, Cologne, Germany.
Violetta KubothCentre for Familial Breast and Ovarian Cancer, Centre for Integrated Oncology (CIO), Faculty of Medicine, University of Cologne, University Hospital of Cologne, Kerpener Straße 62, 50937, Cologne, Germany.
Julia DickCentre for Familial Breast and Ovarian Cancer, Centre for Integrated Oncology (CIO), Faculty of Medicine, University of Cologne, University Hospital of Cologne, Kerpener Straße 62, 50937, Cologne, Germany.
Vera VennedeyInstitute for Health Economics and Clinical Epidemiology, The University Hospital of Cologne, Gleueler Straße 176-178, 50935, Cologne, Germany.
Regina WiedemannCentre for Familial Breast and Ovarian Cancer, Centre for Integrated Oncology (CIO), Faculty of Medicine, University of Cologne, University Hospital of Cologne, Kerpener Straße 62, 50937, Cologne, Germany.
Rita SchmutzlerCentre for Familial Breast and Ovarian Cancer, Centre for Integrated Oncology (CIO), Faculty of Medicine, University of Cologne, University Hospital of Cologne, Kerpener Straße 62, 50937, Cologne, Germany.
Stephanie StockInstitute for Health Economics and Clinical Epidemiology, The University Hospital of Cologne, Gleueler Straße 176-178, 50935, Cologne, Germany.
University Hospital Cologne · DEUniversity of Cologne · DEUniversity of British Columbia · CA

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundWomen 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.

methodsA 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.

resultsNo 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).

conclusionsIn 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.

Indexed as

Breast NeoplasmsDecision Support TechniquesOvarian NeoplasmsBRCA1 ProteinBRCA2 ProteinFemaleGenes, BRCA1Genes, BRCA2Genetic Predisposition to DiseaseGermanyHumansMutationBRCA1 ProteinBRCA1 protein, humanBRCA2 ProteinBRCA2 protein, humanBRCA1BRCA1/2 mutation carriersBRCA2Decision aidsDevelopment processHereditary breast and ovarian cancerPreference-sensitive decisionsPreventive options

Identifiers

PMID34090422
PMCPMC8180100
OpenAlexW3172646941

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.