Development and Testing of a Decision Aid for Unaffected Women with a BRCA1 or BRCA2 Mutation

Jabaley, Terri; Underhill-Blazey, Meghan; Berry, Donna L.

doi:10.1007/s13187-019-1470-9

Cited by 14 publications

(46 citation statements)

References 22 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…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 . In context to genetic testing for hereditary cancers, it is critical to not only understand, but address barriers to effective communication.…”

Section: Introductionmentioning

confidence: 99%

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

Pollard

Kalloger

Weymann

et al. 2020

Health Expectations

View full text Add to dashboard Cite

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.

show abstract

Section: Introductionmentioning

confidence: 99%

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

Pollard

Kalloger

Weymann

et al. 2020

Health Expectations

View full text Add to dashboard Cite

show abstract

“…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%

“…3 bis 5), die Unklarheit bei dieser Option spiegelt sich auch in den EH wider: In einer der betreffenden EH wird die medikamentöse Prävention gar nicht genannt [33], in 3 EH werden alle derzeit diskutierten Optionen (Raloxifen, Tamoxifen, Aromatase-Inhibitoren) erwähnt [37,42,45]. Kritisch zu sehen ist, dass eine Früherkennung von EK mittels CA-125-Testung und/oder transvaginalem Ultraschall in 7 EH als mögliche Präventionsoption ge-nannt wird, darunter in 3 EH aus dem Jahr 2019 [29,40,43]. In der deutschen S3-Leitlinie EK [8] und in internationalen Guidelines [48,49] wird eindeutig von einem solchen Screening abgeraten.…”

Section: Qualitätunclassified

“…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.…”

unclassified

See 1 more Smart Citation

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

Krassuski

Kautz-Freimuth

Vennedey

et al. 2021

Geburtshilfe Frauenheilkd

View full text Add to dashboard Cite

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.

show abstract

“…Internationally, only a few studies have explored decision support for BRCA1/2-positive women without breast cancer. One recent study pilot tested a paperbased decision aid and found it was well accepted by affected women as well was experts [33]. A randomized controlled trial (RCT) testing the effectiveness of a decision aid recruited women up to one month after receiving a positive BRCA1/2 test result and were followed for 12 months [34].…”

Section: Background and Rationale {6a}mentioning

confidence: 99%

Implementation and evaluation of a nurse-led decision-coaching program for healthy breast cancer susceptibility gene (BRCA1/2) mutation carriers: a study protocol for the randomized controlled EDCP-BRCA study

Isselhard

Töpper

Berger-Höger

et al. 2020

Trials

View full text Add to dashboard Cite

Background: Female BRCA mutation carriers have an increased lifetime risk for breast and ovarian cancer compared to the general population. Women who carry this mutation have several options to deal with their cancer risk, such as risk-reducing surgeries or intensified breast cancer screening. Previous research has shown that preferences in this scenario are highly dependent on affected women's personalities and value systems. To support these women in the decision-making process, a structured decision support consisting of decision coaching combined with a decision aid might be helpful. Methods/design: A randomized controlled trial will be conducted in order to compare usual care with structured decision support alongside usual care. The decision support program entails nurse-led decision coaching as well as an evidence-based patient decision aid. Nurses are qualified by a 4-day training program in informed decisionmaking and decision coaching. Six centers for Familial Breast and Ovarian Cancer in Germany will be included in the study, with a planned sample size of 398 women. The primary outcome is the congruence between the preferred and the actual played role in the decision-making process as measured by the Control Preferences Scale. It is hypothesized that the structured decision support will enable women to play the preferred role in the decision-making process. Secondary outcomes include the knowledge and attitudes about preventive options, decisional conflict, depression and anxiety, coping self-efficacy, impact of event, and self-concept. A process evaluation will accompany the study. Discussion: The EDCP-BRCA study is the first study to implement and evaluate decision coaching combined with a decision aid for healthy BRCA mutation carriers worldwide. Trial registration {2a}: DRKS-ID: DRKS00015527. Registered 30 October 2019.

show abstract

Development and Testing of a Decision Aid for Unaffected Women with a BRCA1 or BRCA2 Mutation

Cited by 14 publications

References 22 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

Implementation and evaluation of a nurse-led decision-coaching program for healthy breast cancer susceptibility gene (BRCA1/2) mutation carriers: a study protocol for the randomized controlled EDCP-BRCA study

Contact Info

Product

Resources

About