A patient decision aid for risk‐reducing surgery in premenopausal <i>BRCA1/2</i> mutation carriers: Development process and pilot testing

Harmsen, Marline G.; Steenbeek, Miranda P; Hoogerbrugge, Nicoline; Doorn, Helena C. van; Gaarenstroom, Katja N.; Vos, M. Caroline; Massuger, Leon F.A.G.; Hullu, Joanne A. de; Hermens, Rosella

doi:10.1111/hex.12661

Cited by 18 publications

(48 citation statements)

References 33 publications

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“…To date, there is a lack of patient‐directed guidance to mitigate challenges to communicating genetic risk to relatives. High‐quality patient decision support techniques present an opportunity to enhance shared decision making and supplement genetic counselling sessions, but do not yet exist for the purposes of enhancing interfamilial communication about hereditary cancers 23,24 . Decision support techniques have been shown to increase patient‐physician communication; promote accurate knowledge; clarify values; resolve decisional conflict; and increase decisional satisfaction 25‐31 .…”

Section: Introductionmentioning

confidence: 99%

Genetic testing for hereditary cancer syndromes: patient recommendations for improved risk communication

Pollard

Kalloger

Weymann

et al. 2020

Health Expectations

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Background Multi‐gene panel testing is replacing single‐gene testing for patients with suspected hereditary cancer syndromes. The detection of a hereditary cancer syndrome allows tested individuals to initiate enhanced primary and secondary prevention efforts—where available—with a view to reduce disease burden. Current policy prevents testing programmes from communicating genetic test results with potentially affected family members, yet it is well documented that tested individuals face multiple challenges in initiating such discussions with relatives. Objective In response to this challenge, we sought patient recommendations about how to improve genetic risk communication to enhance interfamilial discussions about primary and secondary disease prevention. Design We conducted 25 semi‐structured interviews with individuals who received genetic testing through British Columbia’s Hereditary Cancer Program between 2017 and 2018. Interviews were professionally transcribed and analysed using a constant comparative approach. Results Participants described difficulty engaging in conversations with relatives who were resistant to receiving genetic risk information, when communicating with younger relatives and where participants reported strained familial relationships. Participants recommended that testing facilities provide a summary of results and implications and that resources be made available to prepare patients for challenging discussions with family members. Discussion Our study demonstrates that individuals undergoing genetic testing for suspected hereditary cancer syndromes would benefit from additional supportive resources alongside genetic counselling. Providing this on‐going support will enhance the accurate and transparent communication of risk to facilitate the uptake of cascade testing and enhanced prevention strategies.

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Section: Introductionmentioning

confidence: 99%

Genetic testing for hereditary cancer syndromes: patient recommendations for improved risk communication

Pollard

Kalloger

Weymann

et al. 2020

Health Expectations

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“…Ten DAs are described in primary studies and were found in the database search 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 . Six of these were available as full version 28 , 29 , 32 , 33 , 34 , 35 . Four DAs were not available as full version as two authors could no longer access the DA 27 , 31 , the format of the DA was no longer in use 36 or our enquiry was not answered 30 .…”

Section: Resultsmentioning

confidence: 99%

“…Nicht ausgewertet werden konnte die Information, auf welche Art und Weise die Frauen auf die EH zugreifen konnten, da es hierzu in mehreren EH bzw. in den dazugehörigen Studien keine klaren Angaben gab.InhaltInhaltlich können die EH in 3 Gruppen eingeteilt werden: 5 der 20 EH (25 %) beschreiben sowohl präventive Maßnahmen für BK als auch für EK[27,29,31,33,35], 9 (45 %) haben den Fokus auf präventiven BK-Maßnahmen[32,37,39,42,45,46], 6 (30 %) auf präventiven EK-Maßnahmen[34,38,40,41,43,44]. Eine weitergehende Analyse der Inhalte der EH konnte nur für die 16 EH erfolgen, die in Vollversion vorlagen.…”

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Decision Aids for Preventive Treatment Alternatives for BRCA1/2 Mutation Carriers: a Systematic Review

Krassuski

Kautz-Freimuth

Vennedey

et al. 2021

Geburtshilfe Frauenheilkd

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Introduction Women with a pathogenic BRCA1/2 mutation have a markedly increased lifetime risk of developing breast and/or ovarian cancer. The current preventive treatment alternatives that are offered are an intensified breast cancer screening programme and risk-reducing operations. Before deciding on one option, medical and personal factors such as life situation and individual preferences must be weighed carefully. Decision aids are used internationally to support BRCA1/2 mutation carriers during their decision-making process. In this study these are analysed structurally for the first time and their applicability to the German context is examined. Material and Methods A systematic literature search in five electronic databases and a manual search were performed. The identified decision aids were evaluated with regard to formal criteria, medical content and quality. The qualitative assessment used the criteria of the International Patient Decision Aid Standards Collaboration (IPDASi v4.0), which examined various dimensions (e.g., information, probabilities, values). Results Twenty decision aids, which were published between 2003 and 2019 in Australia (n = 4), the United Kingdom (n = 3), Canada (n = 2), the Netherlands (n = 2) and the USA (n = 9), were included. Nine focus on BRCA1/2 mutation carriers and eleven include other risk groups. Eighteen include risk-reducing operations as decision options, 14 list screening methods for breast and/or ovarian cancer, and 13 describe the possibility of pharmacological prevention by means of selective oestrogen receptor modulators or aromatase inhibitors. Nine of the 20 decision aids meet fundamental quality criteria (IPDASi v4.0 qualification criteria). Conclusion International decision aids can serve formally as a basis for a German decision aid for BRCA1/2 mutation carriers. Some of them differ markedly in content from the recommendations of German guidelines. Only a few achieve a high quality.

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“…These DAs provide differentiated risk information for women with BRCA1 and BRCA2 mutations and address questions relating to dealing with both the BC risk and the OC risk. This represents an advantage compared to international DAs, which do not differentiate between BRCA1 and BRCA2 mutation carriers with and without a history of BC [ 72 , 73 ], which address a broader target group of women with an increased risk of BC and/or OC [ 59 – 61 , 64 , 74 , 75 ], and which primarily tackle either the risks of BC [ 59 , 64 ] or OC [ 60 , 63 , 74 – 76 ]. There are very few DAs specifically designed for women with BRCA1/2 mutations with a history of BC [ 77 ].…”

Section: Discussionmentioning

confidence: 99%

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

Kautz-Freimuth

Redaélli

Rhiem

et al. 2021

BMC Med Inform Decis Mak

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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.

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A patient decision aid for risk‐reducing surgery in premenopausal BRCA1/2 mutation carriers: Development process and pilot testing

Cited by 18 publications

References 33 publications

Genetic testing for hereditary cancer syndromes: patient recommendations for improved risk communication

Genetic testing for hereditary cancer syndromes: patient recommendations for improved risk communication

Decision Aids for Preventive Treatment Alternatives for BRCA1/2 Mutation Carriers: a Systematic Review

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

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