Advertisement
Systematic Review| Volume 25, ISSUE 4, 100001, April 2023

Informational needs of individuals from families harboring BRCA pathogenic variants: A systematic review and content analysis

Open AccessPublished:December 18, 2022DOI:https://doi.org/10.1016/j.gim.2022.100001
Informational needs of individuals from families harboring BRCA pathogenic variants: A systematic review and content analysis
Next ArticleThe evolving role of medical geneticists in the era of gene therapy: An urgency to prepare

      Abstract

      Purpose

      Personalized information is paramount to patient-centered communication and decision-making regarding risk management in hereditary cancer syndromes. This systematic review identified information needs of individuals from families harboring BRCA pathogenic variants and compared findings based on gender (women vs men) and clinical characteristics (patients with cancer vs previvors and BRCA heterozygotes vs untested relatives).

      Methods

      We screened 8115 studies identified from databases and citation searching. The quality of selected studies was assessed using the Mixed Methods Appraisal Tool. Narrative synthesis was conducted based on content analysis.

      Results

      From 18 selected studies including 1063 individuals, we identified 9 categories of information needs. Risk of bias in the selected studies was moderate. Men, untested relatives, and racial and ethnic minorities were underrepresented. Frequently required information was personalized cancer risk and risk-reducing strategies, including decision-making, family implications of hereditary cancers, psychological issues, and cascade testing. Subgroup analyses showed that information needs depended on gender, personal cancer history, and cascade testing in relatives.

      Conclusion

      We identified comprehensive and detailed informational needs of individuals from families harboring BRCA pathogenic variants and gaps in international guidelines. Needs for personalized information varied based on gender, health, and genetic testing status. Findings of this study have implications for genetic counseling, tailoring educational materials, and personalizing interventions.

      Keywords

      Introduction

      Identifying a disease-causing germline pathogenic variant can be overwhelming for individuals and families.

      Petrucelli N, Daly MB. Pal T. BRCA1- and BRCA2-associated hereditary breast and ovarian cancer. In: Adam MP, Ardinger HH, Mirzaa GM, et al, eds. Gene Reviews [Internet]. University of Washington; 1993-2022.

      Women have approximately 70% risk of breast cancer and 12% to 45% risk of ovarian cancer by age 80 years if they carry pathogenic variants in BRCA1 and BRCA2 genes (hereafter termed as BRCA), respectively.
      • Hartmann L.C.
      • Lindor N.M.
      The role of risk-reducing surgery in hereditary breast and ovarian cancer.
      N Engl J Med. 2016; 374: 454-468https://doi.org/10.1056/NEJMra1503523
      Men with BRCA pathogenic variants have a 21% to 27% risk of prostate cancer and 1.2% to 6.8% risk of breast cancer by age 75 years.
      • Nyberg T.
      • Frost D.
      • Barrowdale D.
      • et al.
      Prostate cancer risks for male BRCA1 and BRCA2 mutation carriers: a prospective cohort study.
      Eur Urol. 2020; 77: 24-35https://doi.org/10.1016/j.eururo.2019.08.025
      ,
      • Giordano S.H.
      Breast cancer in men.
      N Engl J Med. 2018; 378: 2311-2320https://doi.org/10.1056/NEJMra1707939
      Having a high cancer risk and the possibility of passing on the pathogenic variant to offspring cause significant uncertainty regarding risk management and difficulties in family communication about genetic testing results.
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      , 
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      , 
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      , 
      • Liede A.
      • Metcalfe K.
      • Hanna D.
      • et al.
      Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling.
      Am J Hum Genet. 2000; 67: 1494-1504https://doi.org/10.1086/316907
      , 
      • Dean M.
      • Davidson L.G.
      Previvors’ uncertainty management strategies for hereditary breast and ovarian cancer.
      Health Commun. 2018; 33: 122-130https://doi.org/10.1080/10410236.2016.1250187
      Women with BRCA pathogenic variants face significant challenges in deciding about risk-reducing options, including prophylactic mastectomy and salpingo-oophorectomy,

      Petrucelli N, Daly MB. Pal T. BRCA1- and BRCA2-associated hereditary breast and ovarian cancer. In: Adam MP, Ardinger HH, Mirzaa GM, et al, eds. Gene Reviews [Internet]. University of Washington; 1993-2022.

      ,
      • Hartmann L.C.
      • Lindor N.M.
      The role of risk-reducing surgery in hereditary breast and ovarian cancer.
      N Engl J Med. 2016; 374: 454-468https://doi.org/10.1056/NEJMra1503523
      because these surgeries have multifarious social and medical effects due to the removal of organs not affected by cancer.
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      Providing personalized information is an effective strategy for enhancing knowledge about the genetics of cancer risks and managing anxiety and uncertainty in families harboring pathogenic BRCA variants.
      • Dean M.
      • Davidson L.G.
      Previvors’ uncertainty management strategies for hereditary breast and ovarian cancer.
      Health Commun. 2018; 33: 122-130https://doi.org/10.1080/10410236.2016.1250187
      ,
      • Fletcher C.
      • Flight I.
      • Chapman J.
      • Fennell K.
      • Wilson C.
      The information needs of adult cancer survivors across the cancer continuum: a scoping review.
      Patient Educ Couns. 2017; 100: 383-410https://doi.org/10.1016/j.pec.2016.10.008
      Personalized information also enables individuals to make informed decisions and participate in shared medical decision-making.
      • Dean M.
      • Davidson L.G.
      Previvors’ uncertainty management strategies for hereditary breast and ovarian cancer.
      Health Commun. 2018; 33: 122-130https://doi.org/10.1080/10410236.2016.1250187
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      Members of these families have unique informational needs based on individual characteristics, eg, gender,
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      ,
      • Rauscher E.A.
      • Dean M.
      • Campbell-Salome G.M.
      ‘I Am Uncertain About What My Uncertainty Even Is’: men’s uncertainty and information management of their BRCA-related cancer risks.
      J Genet Couns. 2018; 27: 1417-1427https://doi.org/10.1007/s10897-018-0276-y
      whether they had genetic testing or not,
      • Brédart A.
      • De Pauw A.
      • Anota A.
      • et al.
      Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.
      Breast. 2021; 60: 38-44https://doi.org/10.1016/j.breast.2021.08.011
      and whether they have a cancer diagnosis associated with Hereditary Breast and Ovarian Cancer Syndrome (HBOC)- or they have a BRCA pathogenic variant but they have never been diagnosed with cancer.
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      Previous studies highlighted the increased need for personalized information; however, in practice, the most common unmet need of members from these families is the lack of adequate information.
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Rauscher E.A.
      • Dean M.
      • Campbell-Salome G.M.
      ‘I Am Uncertain About What My Uncertainty Even Is’: men’s uncertainty and information management of their BRCA-related cancer risks.
      J Genet Couns. 2018; 27: 1417-1427https://doi.org/10.1007/s10897-018-0276-y
      Although genetic counseling addresses genetic testing, cancer risks, prevention, and risk management, members of families harboring pathogenic BRCA variants, including those who had counseling, often require additional information and actively search informational sources, eg, in the internet
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      ,
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      , 
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      , 
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      , 
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      and other media.
      • Clarke M.A.
      • Moore J.L.
      • Steege L.M.
      • et al.
      Health information needs, sources, and barriers of primary care patients to achieve patient-centered care: a literature review.
      Health Informatics J. 2016; 22: 992-1016https://doi.org/10.1177/1460458215602939
      Because the demand for reliable information addressing all members of families harboring pathogenic BRCA variants has been growing,
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      ,
      • Fletcher C.
      • Flight I.
      • Chapman J.
      • Fennell K.
      • Wilson C.
      The information needs of adult cancer survivors across the cancer continuum: a scoping review.
      Patient Educ Couns. 2017; 100: 383-410https://doi.org/10.1016/j.pec.2016.10.008
      a comprehensive synthesis of empirical findings from studies with a broad focus is essential.
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      This systematic review explored the informational needs of individuals from families harboring pathogenic BRCA variants and compared the findings based on gender, ie, women vs men; personal cancer history, ie, individuals with an HBOC-associated cancer diagnosis (patients with cancer) vs individuals with a pathogenic variant but without cancer (previvors); and genetic testing status, ie, individuals with a confirmed pathogenic BRCA variant vs untested relatives who consider cascade testing. As personalization and tailoring increases the relevance of messages in medical communication,
      • Clarke M.A.
      • Moore J.L.
      • Steege L.M.
      • et al.
      Health information needs, sources, and barriers of primary care patients to achieve patient-centered care: a literature review.
      Health Informatics J. 2016; 22: 992-1016https://doi.org/10.1177/1460458215602939
      our findings may assist clinicians in various disciplines meet patients’ expectations, promote patient-centered communication, and increase the quality of patient care.

      Materials and Methods

      Design

      This systematic review was performed and written following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) 2020 guidelines.
      • Page M.J.
      • McKenzie J.E.
      • Bossuyt P.M.
      • et al.
      The PRISMA 2020 statement: an updated guideline for reporting systematic reviews.
      BMJ. 2021; 372: n71https://doi.org/10.1136/bmj.n71
      We also used Sandelowski’s mixed-method review methodology to explore the topic across different types of study designs, specifically studies that collected quantitative and/or narrative data.
      • Sandelowski M.
      Combining qualitative and quantitative sampling, data collection, and analysis techniques in mixed-method studies.
      Res Nurs Health. 2000; 23: 246-255https://doi.org/10.1002/1098-240x(200006)23:3<246::aid-nur9>3.0.co;2-h
      The protocol was prospectively registered in the International Prospective Register of Systematic Reviews (PROSPERO) database under review number CRD42021293285.

      Eligibility criteria

      Supplemental Table 1 presents detailed eligibility criteria. Studies were included if they examined the information needs of different members of families harboring pathogenic BRCAvariants, focusing on those with a confirmed pathogenic variant and/or on individuals from families known to harbor an HBOC-associated vaiant who did not have genetic testing. We considered only original studies, including randomized trials, cross-sectional, case-control, retrospective or prospective cohort studies, and case reports. We excluded studies that did not address the outcome of interest, ie, information needs and studies that did not target the populations of interest, ie, solely focused on health care professionals or non−blood relatives, or involved animal or preclinical experiments. To improve the quality of this systematic review, we excluded studies that were not published in peer-reviewed journals, eg, conference abstracts or gray literature, eg, dissertations, white reports, and studies that did not collect primary data, eg, reviews, letters, editorials. Finally, we eliminated studies published in languages other than English because of time and resource limitations.

      Literature search strategy

      The scientific literature was searched in 3 stages. First, we identified the correct search terms by reviewing 2572 relevant abstracts retrieved from Ovid MEDLINE, Ovid Embase, EBSCO CINAHL, and Cochrane Central Register of Controlled Trials on September 01, 2021. The final search terms were combined using “OR” for similar terms and “AND” for different clusters. The main search terms were “BRCA,” “hereditary breast-ovarian cancer,” “HBOC,” “cancer predisposition,” “genetic testing,” “genetic counseling,” and “informational needs” (Supplemental Table 2). Second, literature search using the predetermined search terms was performed in 5 databases, ie, Ovid MEDLINE, Ovid Embase, EBSCO CINAHL, Cochrane Central Register of Controlled Trials, and Ovid PsycINFO, from database inception to October 06, 2021. The database search was finalized on May 12, 2022. Third, we identified additional articles by manually searching the reference lists of eligible articles using Google Scholar (Figure 1). All publication periods were included in the initial search for the review of titles and abstracts.
      After exporting relevant literature from each database to a bibliography management program (EndNote 20; Clarivate Analytics, Inc), we removed ineligible articles and duplicate references using the Bramer method of deduplication.
      • Bramer W.M.
      • Giustini D.
      • de Jonge G.B.
      • Holland L.
      • Bekhuis T.
      De-duplication of database search results for systematic reviews in EndNote.
      J Med Libr Assoc. 2016; 104 (Published correction appears in J Med Libr Assoc. 2017;105(1):111): 240-243https://doi.org/10.3163/1536-5050.104.3.014
      Two team members independently reviewed the titles and abstracts and subsequently selected the eligible studies using Rayyan software.
      • Ouzzani M.
      • Hammady H.
      • Fedorowicz Z.
      • Elmagarmid A.
      Rayyan-a web and mobile app for systematic reviews.
      Syst Rev. 2016; 5: 210https://doi.org/10.1186/s13643-016-0384-4
      In case of discrepancies, full text of the articles was reviewed. Any disagreements between the 2 reviewers were resolved through discussion with the whole research team. Reasons for the excluding the articles are provided in Supplemental Table 3.

      Risk of bias assessment

      Two team members independently appraised the quality of selected studies using the Mixed Methods Appraisal Tool (MMAT) version 2018,
      • Hong Q.N.
      • Fàbregues S.
      • Bartlett G.
      • et al.
      The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers.
      Educ Inf. 2018; 34 (version 2018): 285-291https://doi.org/10.3233/EFI-180221
      which is designed to appraise the methodological quality of studies with diverse design, including qualitative, quantitative, and mixed methods.
      • Hong Q.N.
      • Fàbregues S.
      • Bartlett G.
      • et al.
      The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers.
      Educ Inf. 2018; 34 (version 2018): 285-291https://doi.org/10.3233/EFI-180221
      The MMAT uses 2 screening questions “clear research questions” and “collected data allow answering the research questions,” and 5 questions related to the study design (Supplemental Table 4).
      • Hong Q.N.
      • Fàbregues S.
      • Bartlett G.
      • et al.
      The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers.
      Educ Inf. 2018; 34 (version 2018): 285-291https://doi.org/10.3233/EFI-180221
      To appraise the quality of selected studies, we chose the appropriate tools based on study design.
      • Hong Q.N.
      • Fàbregues S.
      • Bartlett G.
      • et al.
      The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers.
      Educ Inf. 2018; 34 (version 2018): 285-291https://doi.org/10.3233/EFI-180221
      We rated the 2 screening questions as “yes” or “no” depending on whether or not an appropriate answer was given to the MMAT questions and provided a rating “cannot assess” if the study provided inadequate or inaccurate information. The number of responses ranked as “yes” was summed to calculate the overall score.
      • Hong Q.N.
      • Fàbregues S.
      • Bartlett G.
      • et al.
      The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers.
      Educ Inf. 2018; 34 (version 2018): 285-291https://doi.org/10.3233/EFI-180221
      Details are shown in Supplemental Table 4.

      Data extraction

      We used Bayesian conversion methods for data extraction and generated summative statements from a meta-aggregation between the collected quantitative and narrative data.
      • Pearson A.
      • White H.
      • Bath-Hextall F.
      • Salmond S.
      • Apostolo J.
      • Kirkpatrick P.
      A mixed-methods approach to systematic reviews.
      Int J Evid Based Healthc. 2015; 13: 121-131https://doi.org/10.1097/XEB.0000000000000052
      For studies with quantitative data, we extracted the questions used in questionnaires and the results pertinent to information needs without mining statistical data, such as P values, percentages of correct answers, odds ratios, and hazard ratios.
      • Pearson A.
      • White H.
      • Bath-Hextall F.
      • Salmond S.
      • Apostolo J.
      • Kirkpatrick P.
      A mixed-methods approach to systematic reviews.
      Int J Evid Based Healthc. 2015; 13: 121-131https://doi.org/10.1097/XEB.0000000000000052
      To create compatibility between the quantitative and narrative data, we coded narrative data directly after extraction, whereas we converted quantitative data into a narrative data format before coding.
      • Pearson A.
      • White H.
      • Bath-Hextall F.
      • Salmond S.
      • Apostolo J.
      • Kirkpatrick P.
      A mixed-methods approach to systematic reviews.
      Int J Evid Based Healthc. 2015; 13: 121-131https://doi.org/10.1097/XEB.0000000000000052
      Two reviewers independently extracted all relevant data from included studies based on the following categories: bibliographic data (eg, first author, publication year, country), study aim, study design, data collection method, sample size, and population characteristics, including gender, race and ethnicity, and personal cancer history, ie, patients with cancer or previvors, genetic testing status, ie, individuals with a BRCA pathogenic variant or untested relatives. We also compared the extracted data based on the population characteristics mentioned earlier.

      Data analysis

      We conducted deductive content analysis to synthesize and compare the extracted quantitative and narrative data to answer the research questions.
      • Elo S.
      • Kyngäs H.
      The qualitative content analysis process.
      J Adv Nurs. 2008; 62: 107-115https://doi.org/10.1111/j.1365-2648.2007.04569.x
      We created an abstraction tool that randomly used selected studies to group similar variables into themes.
      • Elo S.
      • Kyngäs H.
      The qualitative content analysis process.
      J Adv Nurs. 2008; 62: 107-115https://doi.org/10.1111/j.1365-2648.2007.04569.x
      After pilot testing and refinement of the initial abstraction tool, 2 reviewers extracted the reported informational needs from eligible studies and coded them independently using a software for narrative data analysis (MAXQDA 2020; VERBI GmbH). All differences in the coding between the 2 reviewers were discussed until an agreement was reached.
      • Elo S.
      • Kyngäs H.
      The qualitative content analysis process.
      J Adv Nurs. 2008; 62: 107-115https://doi.org/10.1111/j.1365-2648.2007.04569.x
      Codes that did not fit the developed taxonomy were assigned to a new category.
      • Hsieh H.F.
      • Shannon S.E.
      Three approaches to qualitative content analysis.
      Qual Health Res. 2005; 15: 1277-1288https://doi.org/10.1177/1049732305276687
      Results present the number of studies, the codes of each category and subcategory, their percentage relative to the total number of studies, and the total number of codes.

      Results

      Characteristics of the selected studies

      Figure 1 shows the selection process of studies included in this review. The search strategy including 5 databases (n = 7335) and manual searching (n = 780) resulted in 8115 hits, of which 18 studies were included in this systematic review.
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      , 
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      , 
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      , 
      • Liede A.
      • Metcalfe K.
      • Hanna D.
      • et al.
      Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling.
      Am J Hum Genet. 2000; 67: 1494-1504https://doi.org/10.1086/316907
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      , 
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      , 
      • Rauscher E.A.
      • Dean M.
      • Campbell-Salome G.M.
      ‘I Am Uncertain About What My Uncertainty Even Is’: men’s uncertainty and information management of their BRCA-related cancer risks.
      J Genet Couns. 2018; 27: 1417-1427https://doi.org/10.1007/s10897-018-0276-y
      , 
      • Brédart A.
      • De Pauw A.
      • Anota A.
      • et al.
      Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.
      Breast. 2021; 60: 38-44https://doi.org/10.1016/j.breast.2021.08.011
      , 
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      , 
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      , 
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      , 
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      , 
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      ,
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
      , 
      • Espenschied C.R.
      • MacDonald D.J.
      • Culver J.O.
      • et al.
      Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.
      J Cancer Educ. 2012; 27: 467-477https://doi.org/10.1007/s13187-012-0373-9
      , 
      • Campfield Bonadies D.
      • Moyer A.
      • Matloff E.T.
      What I wish I’d known before surgery: BRCA carriers’ perspectives after bilateral salipingo-oophorectomy.
      Fam Cancer. 2011; 10: 79-85https://doi.org/10.1007/s10689-010-9384-z
      , 
      • Hurley K.
      • Rubin L.R.
      • Werner-Lin A.
      • et al.
      Incorporating information regarding preimplantation genetic diagnosis into discussions concerning testing and risk management for BRCA1/2 mutations: a qualitative study of patient preferences.
      Cancer. 2012; 118: 6270-6277https://doi.org/10.1002/cncr.27695
      Table 1 presents the characteristics of selected studies and Supplemental Table 5 presents the overall summary. The studies included a total of 1063 individuals (range = 12-204, mean = 59.1, SD = 56.4). Although we did not limit the search according to the publication year, most studies (88.9%) were published after 2011 and 27.8% were published in 2021. In terms of data collection methods, 9 studies only collected narrative data and 8 studies solely collected quantitative data. One study used a mixed-methods design to combine quantitative and narrative data. The majority of the studies were conducted in North America (55.6%) followed by Europe (27.8%). Eight studies (44.5%), including either US-based (16.7%)
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
      , 
      • Espenschied C.R.
      • MacDonald D.J.
      • Culver J.O.
      • et al.
      Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.
      J Cancer Educ. 2012; 27: 467-477https://doi.org/10.1007/s13187-012-0373-9
      , 
      • Campfield Bonadies D.
      • Moyer A.
      • Matloff E.T.
      What I wish I’d known before surgery: BRCA carriers’ perspectives after bilateral salipingo-oophorectomy.
      Fam Cancer. 2011; 10: 79-85https://doi.org/10.1007/s10689-010-9384-z
      or European-based samples (27.8%),
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Brédart A.
      • De Pauw A.
      • Anota A.
      • et al.
      Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.
      Breast. 2021; 60: 38-44https://doi.org/10.1016/j.breast.2021.08.011
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      did not report the race or ethnic background of the participants. Among the remaining 10 studies, 6 included only White participants, including participants of Ashkenazi Jewish, European, or French-Canadian backgrounds;
      • Liede A.
      • Metcalfe K.
      • Hanna D.
      • et al.
      Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling.
      Am J Hum Genet. 2000; 67: 1494-1504https://doi.org/10.1086/316907
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      , 
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      , 
      • Rauscher E.A.
      • Dean M.
      • Campbell-Salome G.M.
      ‘I Am Uncertain About What My Uncertainty Even Is’: men’s uncertainty and information management of their BRCA-related cancer risks.
      J Genet Couns. 2018; 27: 1417-1427https://doi.org/10.1007/s10897-018-0276-y
      ,
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      ,
      • Hurley K.
      • Rubin L.R.
      • Werner-Lin A.
      • et al.
      Incorporating information regarding preimplantation genetic diagnosis into discussions concerning testing and risk management for BRCA1/2 mutations: a qualitative study of patient preferences.
      Cancer. 2012; 118: 6270-6277https://doi.org/10.1002/cncr.27695
      2 studies were conducted in Malaysia and Singapore and included participants of Chinese, Malay, or Indian backgrounds,
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      ,
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      whereas the remaining 2 studies included participants of predominantly White race.
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      Most studies (61.1%) included exclusively women and individuals with BRCA pathogenic variants (66.7%) rather than men (16.7%) and untested relatives (5.6%). More than half included mixed samples of patients with cancer and previvors.
      Figure thumbnail gr1
      Figure 1Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) 2020 flow diagram of searching and selection process.
      Table 1Main characteristics of selected studies (N = 18)
      Reference, Publication YearCountryDesign (Data Collection)Aim(s)Sample Characteristics
      NGenderRace and EthnicityResult of BRCA TestingPersonal Cancer History
      Brédart et al,
      • Brédart A.
      • De Pauw A.
      • Anota A.
      • et al.
      Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.
      Breast. 2021; 60: 38-44https://doi.org/10.1016/j.breast.2021.08.011
      2021      		FranceDescriptive cross-sectional (questionnaires)Explore perceived information received on breast cancer risk factors and related characteristics161Women, n = 161NRRelatives of individuals with BRCA and PALB2, n = NRNR
      Campfield Bonadies et al,
      • Campfield Bonadies D.
      • Moyer A.
      • Matloff E.T.
      What I wish I’d known before surgery: BRCA carriers’ perspectives after bilateral salipingo-oophorectomy.
      Fam Cancer. 2011; 10: 79-85https://doi.org/10.1007/s10689-010-9384-z
      2011      		United StatesDescriptive cross-sectional (questionnaires)Explore perspectives after RRSO99Women, n = 99NRIndividuals with BRCA pathogenic variants, n = 99NR
      Cherry et al,
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
      2013      		United StatesQualitative-content analysis (interviews)Explore needs of individuals with BRCA pathogenic variants considering RRSO12Women, n = 12NRIndividuals with BRCA pathogenic variants, n = 12Patients with cancer, n = 3; previvors, n = 9
      Culver et al,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      2011      		United StatesQualitative-thematic analysis (focus groups)Develop a decision aid on risk-reduction options for patients with breast cancer with BRCA pathogenic variants20Women, n = 20White, n = 13; Hispanic, n = 4; Asian, n = 2Individuals with BRCA pathogenic variants, n = 20Patients with breast cancer, n = 20
      Dean et al,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      2017      		United StatesQualitative (interviews)Explore informational needs for BRCA previvors25Women, n = 25White, n = 25 (Ashkenazi Jewish, n = 8)Individuals with BRCA pathogenic variants, n = 25Previvors, n = 25
      Espenschied et al,
      • Espenschied C.R.
      • MacDonald D.J.
      • Culver J.O.
      • et al.
      Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.
      J Cancer Educ. 2012; 27: 467-477https://doi.org/10.1007/s13187-012-0373-9
      2012      		United StatesDescriptive cross-sectional (action research activities)Assess information needs of patients with hereditary cancer79Women, n = NR; men, n = NRNRIndividuals with BRCA pathogenic variants, n = NR; high risk for BRCA-related cancer, n = NR; family or friends of patients, n = NRPatients with breast or ovarian cancer, n = NR; previvors, n = NR
      Hurley et al,
      • Hurley K.
      • Rubin L.R.
      • Werner-Lin A.
      • et al.
      Incorporating information regarding preimplantation genetic diagnosis into discussions concerning testing and risk management for BRCA1/2 mutations: a qualitative study of patient preferences.
      Cancer. 2012; 118: 6270-6277https://doi.org/10.1002/cncr.27695
      2012      		United StatesQualitative (interviews)Assess attitudes about preimplantation genetic diagnosis of individuals with BRCA pathogenic variants33Women, n = 29; men, n = 4White, n = 30Individuals with BRCA pathogenic variants, n = 33NR
      Jacobs et al,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      2017      		United KingdomDescriptive cross-sectional (Delphi consensus, questionnaires)Identify the key messages required by women with breast/ovarian cancer who undergo genetic testing16Women, n = 16NRIndividuals with BRCA pathogenic variants, n = 16Patients with breast or ovarian cancer, n = 16
      Kautz-Freimuth et al,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      2021      		GermanyQualitative (focus groups)Develop a decision aid on risk-reduction options for individuals with BRCA pathogenic variants19Women, n = 19NRIndividuals with BRCA pathogenic variants, n = 19Patients with cancer, n = 9; previvors, n = 10
      Liede et al,
      • Liede A.
      • Metcalfe K.
      • Hanna D.
      • et al.
      Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling.
      Am J Hum Genet. 2000; 67: 1494-1504https://doi.org/10.1086/316907
      2000      		CanadaDescriptive cross-sectional (questionnaires)Identify unmet needs and describe men’s experiences with genetic services59Men, n = 59White, n = 59 (Ashkenazi Jewish, or European)Individuals with BRCA pathogenic variants, n = 59Patients with cancer, n = 12; previvors, n = 47
      Metcalfe et al,
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      2000      		CanadaDescriptive cross-sectional (questionnaires)Evaluate needs of individuals with BRCA pathogenic variants undergoing genetic counseling79Women, n = 79White, n = 79 (French-Canadian, Ashkenazi Jewish, European, or Hispanic)Individuals with BRCA pathogenic variants, n = 79Patients with cancer, n = 46; previvors, n = 33
      Modaffari et al,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      2019      		ItalyDescriptive cross-sectional (questionnaires)Evaluate expectations and concerns about cancer risk−reducing surgery204Women, n = 204NRIndividuals with BRCA pathogenic variants, n = 192; high risk for BRCA-related cancer, n = 12Patients with breast or ovarian cancer, n = 100; previvors, n = 104
      Peshkin et al,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      2021      		United StatesQualitative (focus groups)Develop a web-based educational tool for untested men in BRCA-positive families13Men, n = 13White, n = 13Individuals with BRCA pathogenic variants, n = 9; untested relatives, n = 3; true negative BRCA, n = 1Previvors, n = 13
      Rauscher et al,
      • Rauscher E.A.
      • Dean M.
      • Campbell-Salome G.M.
      ‘I Am Uncertain About What My Uncertainty Even Is’: men’s uncertainty and information management of their BRCA-related cancer risks.
      J Genet Couns. 2018; 27: 1417-1427https://doi.org/10.1007/s10897-018-0276-y
      2018      		United StatesQualitative (interviews)Examine management of uncertainty and information needs of men about BRCA-related cancer risks25Men, n = 25White, n = 25Individuals with BRCA pathogenic variants, n = NR; first degree relatives of individuals with BRCA pathogenic variants, n = NRNR
      Sa’at et al,
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      2022      		MalaysiaQualitative-grounded theory with thematic analysis (interviews)Explore decision-making needs of individuals with BRCA pathogenic variants31Women, n = 31Asian, n = 31 (Chinese, n = 17; Malay, n = 8; Indian, n = 6)Individuals with BRCA pathogenic variants, n = 31Patients with breast cancer, n = 28; previvors, n = 3
      Visser et al,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      2016      		NetherlandsDescriptive cross-sectional (questionnaires)Evaluate the efficacy of group medical consultations on yearly breast cancer surveillance of individuals with BRCA pathogenic variants132Women, n = 132NRIndividuals with BRCA pathogenic variants, n = 132Patients with breast cancer, n = 10; previvors, n = 122
      Young et al,
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      2019      		AustraliaMixed methods (interviews, questionnaires)Clarify and compare information needs of young adults (18-25 vs 26-40 y)32Women, n = 25; men, n = 7White, n = 25; Asian and Arabic, n = 7Individuals with BRCA pathogenic variants, n = 20; individuals from families with BRCA pathogenic variants, n = 12Patients with cancer, n = 3; previvors, n = 29
      Yuen et al,
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      2020      		SingaporeQualitative (interviews)Explore informational needs of individuals with BRCA pathogenic variants in Asia24Women, n = 22; men, n = 2Asian, n = 24 (Chinese, n = 15; Malay, n = 3; Indian, n = 2; other, n = 4)Individuals with BRCA pathogenic variants, n = 24Patients with breast, ovarian, or prostate cancer, n = 17; previvors, n = 7
      NR, not reported; RRSO, risk-reducing salpingo-oophorectomy.

      Risk of bias assessment

      Supplemental Table 4 presents ratings for each methodological quality criterion. The overall mean quality score for the selected studies was 4.5 (SD = 1.07, range = 0 to 5) on the MMAT.
      • Pearson A.
      • White H.
      • Bath-Hextall F.
      • Salmond S.
      • Apostolo J.
      • Kirkpatrick P.
      A mixed-methods approach to systematic reviews.
      Int J Evid Based Healthc. 2015; 13: 121-131https://doi.org/10.1097/XEB.0000000000000052
      The risk of bias was moderately low, with 72%, 22%, and 6% of the studies meeting 100, ≥ 80, and 40% of the criteria, respectively. In the studies with a quantitative design, the most common risk of bias was a low response rate. No study was excluded based on quality ratings, because this review aimed to explore comprehensive informational from a wide range of studies.

      Informational needs among individuals from families harboring pathogenic BRCA variants

      We extracted 278 codes from the selected studies and grouped them into conceptual categories containing subcategories that described the scope and characteristics of the needed information. This process identified 9 distinct categories and 34 subcategories (Table 2). The most common categories of information needs were about risk-reducing strategies (94.4%), personalized risk assessment (66.7%), family implications of hereditary cancers (55.6%), decision-making for risk-reducing options (44.4%), psychological issues (38.9%), cascade genetic testing (33.3%), the role of BRCA genes in hereditary cancers (22.2%), social issues related to genetic testing (16.7%), and cancer treatment/diagnosis (5.6%). Overall, the ordering of information needs was similar to those of the primary studies. However, although the information about cascade testing was the third most frequently mentioned need, it was addressed by few studies.
      Table 2Informational needs of individuals from families harboring pathogenic BRCA variants (N = 18 studies, 278 codes)
      Informational NeedsCodes of Needs, N (%)
      The percentage of codes in informational needs was determined by dividing the number of codes from each unique subcategory by the sum of all codes (N = 278).
      		Studies, N (%)
      The percentage of reported studies was determined by dividing the number of total studies by the number of selected articles in this review (N = 18).
      		References
      Cancer risk−reducing strategies132 (47.5)17 (94.4)
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      , 
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      , 
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      , 
      • Liede A.
      • Metcalfe K.
      • Hanna D.
      • et al.
      Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling.
      Am J Hum Genet. 2000; 67: 1494-1504https://doi.org/10.1086/316907
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      , 
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      , 
      • Rauscher E.A.
      • Dean M.
      • Campbell-Salome G.M.
      ‘I Am Uncertain About What My Uncertainty Even Is’: men’s uncertainty and information management of their BRCA-related cancer risks.
      J Genet Couns. 2018; 27: 1417-1427https://doi.org/10.1007/s10897-018-0276-y
      , 
      • Brédart A.
      • De Pauw A.
      • Anota A.
      • et al.
      Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.
      Breast. 2021; 60: 38-44https://doi.org/10.1016/j.breast.2021.08.011
      , 
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      , 
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      , 
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      , 
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      , 
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      ,
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
      , 
      • Espenschied C.R.
      • MacDonald D.J.
      • Culver J.O.
      • et al.
      Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.
      J Cancer Educ. 2012; 27: 467-477https://doi.org/10.1007/s13187-012-0373-9
      , 
      • Campfield Bonadies D.
      • Moyer A.
      • Matloff E.T.
      What I wish I’d known before surgery: BRCA carriers’ perspectives after bilateral salipingo-oophorectomy.
      Fam Cancer. 2011; 10: 79-85https://doi.org/10.1007/s10689-010-9384-z
       Types of cancer risk−reducing options9 (3.2)6 (33.3)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      ,
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
       Risk-reducing bilateral salpingo-oophorectomy40 (14.4)11 (61.1)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Brédart A.
      • De Pauw A.
      • Anota A.
      • et al.
      Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.
      Breast. 2021; 60: 38-44https://doi.org/10.1016/j.breast.2021.08.011
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      , 
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      , 
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      ,
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
      ,
      • Campfield Bonadies D.
      • Moyer A.
      • Matloff E.T.
      What I wish I’d known before surgery: BRCA carriers’ perspectives after bilateral salipingo-oophorectomy.
      Fam Cancer. 2011; 10: 79-85https://doi.org/10.1007/s10689-010-9384-z
      Additional information5 (1.8)4 (22.2)
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      , 
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      , 
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      , 
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      Timing3 (1.1)3 (16.7)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
      Benefit5 (1.8)4 (22.2)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      ,
      • Campfield Bonadies D.
      • Moyer A.
      • Matloff E.T.
      What I wish I’d known before surgery: BRCA carriers’ perspectives after bilateral salipingo-oophorectomy.
      Fam Cancer. 2011; 10: 79-85https://doi.org/10.1007/s10689-010-9384-z
      Limitation21 (7.6)10 (55.6)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Brédart A.
      • De Pauw A.
      • Anota A.
      • et al.
      Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.
      Breast. 2021; 60: 38-44https://doi.org/10.1016/j.breast.2021.08.011
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      , 
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      , 
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      ,
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
      ,
      • Campfield Bonadies D.
      • Moyer A.
      • Matloff E.T.
      What I wish I’d known before surgery: BRCA carriers’ perspectives after bilateral salipingo-oophorectomy.
      Fam Cancer. 2011; 10: 79-85https://doi.org/10.1007/s10689-010-9384-z
      Cost and insurance coverage4 (1.4)2 (11.1)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      Operation procedures2 (0.7)2 (11.1)
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      ,
      • Campfield Bonadies D.
      • Moyer A.
      • Matloff E.T.
      What I wish I’d known before surgery: BRCA carriers’ perspectives after bilateral salipingo-oophorectomy.
      Fam Cancer. 2011; 10: 79-85https://doi.org/10.1007/s10689-010-9384-z
       Risk-reducing bilateral mastectomy25 (9.0)8 (44.4)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      ,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      Additional information3 (1.1)3 (16.7)
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      ,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      Timing2 (0.7)2 (11.1)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      Benefit6 (2.2)3 (16.7)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      Limitation4 (1.4)3 (16.7)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      Cost and insurance coverage4 (1.4)2 (11.1)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      Operation procedures and breast reconstructions6 (2.2)4 (22.2)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
       Screening and surveillance36 (12.9)11 (61.1)
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      , 
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      , 
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      ,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      ,
      • Espenschied C.R.
      • MacDonald D.J.
      • Culver J.O.
      • et al.
      Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.
      J Cancer Educ. 2012; 27: 467-477https://doi.org/10.1007/s13187-012-0373-9
      Additional information2 (0.7)2 (11.1)
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      Timing5 (1.8)4 (22.2)
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      Benefit5 (1.8)5 (27.8)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      ,
      • Espenschied C.R.
      • MacDonald D.J.
      • Culver J.O.
      • et al.
      Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.
      J Cancer Educ. 2012; 27: 467-477https://doi.org/10.1007/s13187-012-0373-9
      Limitation8 (2.9)7 (38.9)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      ,
      • Espenschied C.R.
      • MacDonald D.J.
      • Culver J.O.
      • et al.
      Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.
      J Cancer Educ. 2012; 27: 467-477https://doi.org/10.1007/s13187-012-0373-9
      Methods13 (4.7)8 (44.4)
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      , 
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      , 
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      Cost and insurance coverage3 (1.1)3 (16.7)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
       Other risk-reducing options: chemoprevention, contraceptives5 (1.8)4 (22.2)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
       Cancer risk for men, risk-reducing options10 (3.6)3 (16.7)
      • Liede A.
      • Metcalfe K.
      • Hanna D.
      • et al.
      Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling.
      Am J Hum Genet. 2000; 67: 1494-1504https://doi.org/10.1086/316907
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      ,
      • Rauscher E.A.
      • Dean M.
      • Campbell-Salome G.M.
      ‘I Am Uncertain About What My Uncertainty Even Is’: men’s uncertainty and information management of their BRCA-related cancer risks.
      J Genet Couns. 2018; 27: 1417-1427https://doi.org/10.1007/s10897-018-0276-y
       Lifestyle behaviors10 (3.6)4 (22.2)
      • Liede A.
      • Metcalfe K.
      • Hanna D.
      • et al.
      Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling.
      Am J Hum Genet. 2000; 67: 1494-1504https://doi.org/10.1086/316907
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Brédart A.
      • De Pauw A.
      • Anota A.
      • et al.
      Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.
      Breast. 2021; 60: 38-44https://doi.org/10.1016/j.breast.2021.08.011
      ,
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
      Personalized cancer risk37 (13.3)12 (66.7)
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      , 
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      , 
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      , 
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      , 
      • Rauscher E.A.
      • Dean M.
      • Campbell-Salome G.M.
      ‘I Am Uncertain About What My Uncertainty Even Is’: men’s uncertainty and information management of their BRCA-related cancer risks.
      J Genet Couns. 2018; 27: 1417-1427https://doi.org/10.1007/s10897-018-0276-y
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      ,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
      ,
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
      ,
      • Espenschied C.R.
      • MacDonald D.J.
      • Culver J.O.
      • et al.
      Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.
      J Cancer Educ. 2012; 27: 467-477https://doi.org/10.1007/s13187-012-0373-9
       Personalized cancer risk: timing of cancer development and types of cancer based on age and family history13 (4.7)8 (44.4)
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      , 
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      , 
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Modaffari P.
      • Ponzone R.
      • Ferrari A.
      • et al.
      Concerns and expectations of risk-reducing surgery in women with hereditary breast and ovarian cancer syndrome.
      J Clin Med. 2019; 8: 313https://doi.org/10.3390/jcm8030313
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      ,
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
      ,
      • Espenschied C.R.
      • MacDonald D.J.
      • Culver J.O.
      • et al.
      Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.
      J Cancer Educ. 2012; 27: 467-477https://doi.org/10.1007/s13187-012-0373-9
       Previvors’ cancer risk10 (3.6)5 (27.8)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
       Survivors’ recurrence, future cancer risk6 (2.2)2 (11.1)
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
       Men’s cancer risk: prostate, male breast cancer, etc8 (2.9)3 (16.6)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      ,
      • Rauscher E.A.
      • Dean M.
      • Campbell-Salome G.M.
      ‘I Am Uncertain About What My Uncertainty Even Is’: men’s uncertainty and information management of their BRCA-related cancer risks.
      J Genet Couns. 2018; 27: 1417-1427https://doi.org/10.1007/s10897-018-0276-y
       Family implications of hereditary cancer25 (9.0)10 (55.6)
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      , 
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      , 
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      , 
      • Liede A.
      • Metcalfe K.
      • Hanna D.
      • et al.
      Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling.
      Am J Hum Genet. 2000; 67: 1494-1504https://doi.org/10.1086/316907
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      ,
      • Brédart A.
      • De Pauw A.
      • Anota A.
      • et al.
      Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.
      Breast. 2021; 60: 38-44https://doi.org/10.1016/j.breast.2021.08.011
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Espenschied C.R.
      • MacDonald D.J.
      • Culver J.O.
      • et al.
      Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.
      J Cancer Educ. 2012; 27: 467-477https://doi.org/10.1007/s13187-012-0373-9
      ,
      • Hurley K.
      • Rubin L.R.
      • Werner-Lin A.
      • et al.
      Incorporating information regarding preimplantation genetic diagnosis into discussions concerning testing and risk management for BRCA1/2 mutations: a qualitative study of patient preferences.
      Cancer. 2012; 118: 6270-6277https://doi.org/10.1002/cncr.27695
       Disclosing genetic test results and communication with family/relatives8 (2.9)6 (33.3)
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      , 
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      , 
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      , 
      • Liede A.
      • Metcalfe K.
      • Hanna D.
      • et al.
      Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling.
      Am J Hum Genet. 2000; 67: 1494-1504https://doi.org/10.1086/316907
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
       Inheriting cancer risk for family/relatives5 (1.8)5 (27.8)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
      ,
      • Espenschied C.R.
      • MacDonald D.J.
      • Culver J.O.
      • et al.
      Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.
      J Cancer Educ. 2012; 27: 467-477https://doi.org/10.1007/s13187-012-0373-9
       Inheriting cancer risk for current/future children5 (1.8)3 (16.7)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
       Reproductive issue7 (2.5)4 (22.2)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Brédart A.
      • De Pauw A.
      • Anota A.
      • et al.
      Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.
      Breast. 2021; 60: 38-44https://doi.org/10.1016/j.breast.2021.08.011
      ,
      • Hurley K.
      • Rubin L.R.
      • Werner-Lin A.
      • et al.
      Incorporating information regarding preimplantation genetic diagnosis into discussions concerning testing and risk management for BRCA1/2 mutations: a qualitative study of patient preferences.
      Cancer. 2012; 118: 6270-6277https://doi.org/10.1002/cncr.27695
      Decision-making for risk-reducing options14 (5.0)8 (44.4)
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      , 
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      , 
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      ,
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
      ,
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
       Need support6 (2.2)5 (27.8)
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      , 
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      , 
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Culver J.O.
      • MacDonald D.J.
      • Thornton A.A.
      • et al.
      Development and evaluation of a decision aid for BRCA carriers with breast cancer.
      J Genet Couns. 2011; 20 (Published correction appears in J Genet Couns. 2013;22(3):406): 294-307https://doi.org/10.1007/s10897-011-9350-4
       Need peer’s experience7 (2.5)5 (27.8)
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      ,
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      ,
      • Cherry C.
      • Ropka M.
      • Lyle J.
      • Napolitano L.
      • Daly M.B.
      Understanding the needs of women considering risk-reducing salpingo-oophorectomy.
      Cancer Nurs. 2013; 36: E33-E38https://doi.org/10.1097/NCC.0b013e3182642cb5
       Need recommendations from health care providers based on guidelines1 (0.4)1 (5.6)
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      Psychological issues22 (7.9)7 (38.9)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Brédart A.
      • De Pauw A.
      • Anota A.
      • et al.
      Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.
      Breast. 2021; 60: 38-44https://doi.org/10.1016/j.breast.2021.08.011
      ,
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      , 
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      , 
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
       Emotional management and coping16 (5.8)7 (38.9)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Visser A.
      • van Laarhoven H.W.M.
      • Woldringh G.H.
      • Hoogerbrugge N.
      • Prins J.B.
      Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: a randomized controlled trial.
      Acta Oncol. 2016; 55: 178-187https://doi.org/10.3109/0284186X.2015.1049292
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Brédart A.
      • De Pauw A.
      • Anota A.
      • et al.
      Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.
      Breast. 2021; 60: 38-44https://doi.org/10.1016/j.breast.2021.08.011
      ,
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      , 
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
      , 
      • Kautz-Freimuth S.
      • Redaèlli M.
      • Rhiem K.
      • et al.
      Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making.
      BMC Med Inform Decis Mak. 2021; 21: 180https://doi.org/10.1186/s12911-021-01528-4
       Additional emotional support2 (0.7)2 (11.1)
      • Metcalfe K.A.
      • Liede A.
      • Hoodfar E.
      • Scott A.
      • Foulkes W.D.
      • Narod S.A.
      An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling.
      J Med Genet. 2000; 37: 866-874https://doi.org/10.1136/jmg.37.11.866
      ,
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
       Peer support2 (0.7)2 (11.1)
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Sa’at H.
      • Lee Y.K.
      • Yoon S.Y.
      • et al.
      The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study.
      Fam Cancer. 2022; 21: 21-33https://doi.org/10.1007/s10689-021-00232-6
       Referral to psychologist2 (0.7)1 (5.6)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      Cascade genetic testing27 (9.7)6 (33.3)
      • Yuen J.
      • Fung S.M.
      • Sia C.L.
      • et al.
      An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.
      Hered Cancer Clin Pract. 2020; 18: 22https://doi.org/10.1186/s13053-020-00154-x
      ,
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      , 
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      , 
      • Rauscher E.A.
      • Dean M.
      • Campbell-Salome G.M.
      ‘I Am Uncertain About What My Uncertainty Even Is’: men’s uncertainty and information management of their BRCA-related cancer risks.
      J Genet Couns. 2018; 27: 1417-1427https://doi.org/10.1007/s10897-018-0276-y
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
       Implication9 (3.2)4 (22.2)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
      ,
      • Rauscher E.A.
      • Dean M.
      • Campbell-Salome G.M.
      ‘I Am Uncertain About What My Uncertainty Even Is’: men’s uncertainty and information management of their BRCA-related cancer risks.
      J Genet Couns. 2018; 27: 1417-1427https://doi.org/10.1007/s10897-018-0276-y
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
       Benefit3 (1.1)2 (11.1)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Jacobs C.
      • Pichert G.
      • Harris J.
      • Tucker K.
      • Michie S.
      Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: consensus across health professionals and service users.
      Psychooncology. 2017; 26: 1818-1824https://doi.org/10.1002/pon.4379
       Cost and insurance coverage6 (2.2)3 (16.7)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167
      ,
      • Dean M.
      • Scherr C.L.
      • Clements M.
      • Koruo R.
      • Martinez J.
      • Ross A.
      ‘When information is not enough’: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk.
      Patient Educ Couns. 2017; 100: 1738-1743https://doi.org/10.1016/j.pec.2017.03.013
      ,
      • Peshkin B.N.
      • Ladd M.K.
      • Isaacs C.
      • et al.
      The Genetic Education for Men (GEM) Trial: development of web-based education for untested men in BRCA1/2-positive families.
      J Cancer Educ. 2021; 36: 72-84https://doi.org/10.1007/s13187-019-01599-y
       Process3 (1.1)2 (11.1)
      • Young A.L.
      • Butow P.N.
      • Tucker K.M.
      • Williams R.
      • Healey E.
      • Wakefield C.E.
      Health professional and at-risk BRCA young adult perspectives about information needs: what does Gen Y need to know?.
      J Genet Couns. 2019; 28: 1154-1165https://doi.org/10.1002/jgc4.1167