Literature DB >> 29971606

"I Am Uncertain About What My Uncertainty Even Is": Men's Uncertainty and Information Management of Their BRCA-Related Cancer Risks.

Emily A Rauscher1, Marleah Dean2, Gemme M Campbell-Salome3.   

Abstract

Men with a germline pathogenic BRCA1 or BRCA2 variant have increased risks for developing breast, pancreatic, prostate, and melanoma cancers, but little is known about how they understand and manage their cancer risks. This study examines how men with BRCA-related cancer risks manage uncertainty and information about their risks. Twenty-five men who were either a BRCA carrier or have a BRCA-positive first-degree family member that put the participant at 50% chance of also being a BRCA carrier were interviewed for this study. Using uncertainty management theory as a theoretical framework, this study demonstrates that men manage uncertainty by seeking information from female family members, websites, and healthcare providers, and are under-informed about their cancer risks. Further, in handling their information, men prefer information about cancer risk percentages and screening recommendations in the form of lists presented to them via websites, printed literature, proactive healthcare providers, and an identifiable male spokesperson. Finally, men used BRCA-related cancer risk information to make decisions about whether or not to engage in screening and prevention, manage their BRCA-related cancer risks, and overall family well-being-yet often at the expense of their own individual risks. Implications for genetic counseling and family conversations are discussed.

Entities:  

Keywords:  BRCA1/2; Hereditary cancer risk; Men; Uncertainty management theory

Mesh:

Substances:

Year:  2018        PMID: 29971606     DOI: 10.1007/s10897-018-0276-y

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  22 in total

1.  Stigmatization and male identity: Norwegian males' experience after identification as BRCA1/2 mutation carriers.

Authors:  Nina Strømsvik; Målfrid Råheim; Nina Oyen; Lars Fredrik Engebretsen; Eva Gjengedal
Journal:  J Genet Couns       Date:  2010-03-20       Impact factor: 2.537

2.  "Second-Class Status?" Insight into Communication Patterns and Common Concerns Among Men with Hereditary Breast and Ovarian Cancer Syndrome.

Authors:  Alexandra Suttman; Robert Pilarski; Doreen M Agnese; Leigha Senter
Journal:  J Genet Couns       Date:  2018-02-05       Impact factor: 2.537

3.  Communication of Information about Genetic Risks: Putting Families at the Center.

Authors:  Álvaro Mendes; Alison Metcalfe; Milena Paneque; Liliana Sousa; Angus J Clarke; Jorge Sequeiros
Journal:  Fam Process       Date:  2017-07-16

4.  Within-Gender Differences in Medical Decision Making Among Male Carriers of the BRCA Genetic Mutation for Hereditary Breast Cancer.

Authors:  Sharlene Hesse-Biber; Chen An
Journal:  Am J Mens Health       Date:  2015-10-14

5.  Health information needs and health-related quality of life in a diverse population of long-term cancer survivors.

Authors:  Erin E Kent; Neeraj K Arora; Julia H Rowland; Keith M Bellizzi; Laura P Forsythe; Ann S Hamilton; Ingrid Oakley-Girvan; Ellen B Beckjord; Noreen M Aziz
Journal:  Patient Educ Couns       Date:  2012-09-28

6.  Mersch J, Jackson MA, Park M, Nebgen D, Peterson SK, Singletary C, Arun BK and Litton JK. Cancers associated with BRCA1 and BRCA2 mutations other than breast and ovarian. Cancer. 2015;121:269-275.

Authors: 
Journal:  Cancer       Date:  2015-04-17       Impact factor: 6.860

7.  'In an important way, I did die': uncertainty and revival in persons living with HIV or AIDS.

Authors:  D E Brashers; J L Neidig; L W Cardillo; L K Dobbs; J A Russell; S M Haas
Journal:  AIDS Care       Date:  1999-04

8.  Guilt, blame and responsibility: men's understanding of their role in the transmission of BRCA1/2 mutations within their family.

Authors:  Nina Hallowell; Audrey Arden-Jones; Ros Eeles; Claire Foster; Anneke Lucassen; Clare Moynihan; Maggie Watson
Journal:  Sociol Health Illn       Date:  2006-11

9.  Germline BRCA1 mutations increase prostate cancer risk.

Authors:  D Leongamornlert; N Mahmud; M Tymrakiewicz; E Saunders; T Dadaev; E Castro; C Goh; K Govindasami; M Guy; L O'Brien; E Sawyer; A Hall; R Wilkinson; D Easton; D Goldgar; R Eeles; Z Kote-Jarai
Journal:  Br J Cancer       Date:  2012-05-08       Impact factor: 7.640

Review 10.  The unfulfilled promise: a systematic review of interventions to reduce the unmet supportive care needs of cancer patients.

Authors:  Mariko Carey; Sylvie Lambert; Rochelle Smits; Chris Paul; Rob Sanson-Fisher; Tara Clinton-McHarg
Journal:  Support Care Cancer       Date:  2011-11-17       Impact factor: 3.603

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  7 in total

1.  YouTube as an information source on BRCA mutations: implications for patients and professionals.

Authors:  Priscila E Laforet; Bhavya Yalamanchili; Grace C Hillyer; Corey H Basch
Journal:  J Community Genet       Date:  2022-01-13

2.  Cancer Risks Associated With BRCA1 and BRCA2 Pathogenic Variants.

Authors:  Shuai Li; Valentina Silvestri; Goska Leslie; Timothy R Rebbeck; Susan L Neuhausen; John L Hopper; Henriette Roed Nielsen; Andrew Lee; Xin Yang; Lesley McGuffog; Michael T Parsons; Irene L Andrulis; Norbert Arnold; Muriel Belotti; Åke Borg; Bruno Buecher; Saundra S Buys; Sandrine M Caputo; Wendy K Chung; Chrystelle Colas; Sarah V Colonna; Jackie Cook; Mary B Daly; Miguel de la Hoya; Antoine de Pauw; Hélène Delhomelle; Jacqueline Eason; Christoph Engel; D Gareth Evans; Ulrike Faust; Tanja N Fehm; Florentia Fostira; George Fountzilas; Megan Frone; Vanesa Garcia-Barberan; Pilar Garre; Marion Gauthier-Villars; Andrea Gehrig; Gord Glendon; David E Goldgar; Lisa Golmard; Mark H Greene; Eric Hahnen; Ute Hamann; Helen Hanson; Tiara Hassan; Julia Hentschel; Judit Horvath; Louise Izatt; Ramunas Janavicius; Yue Jiao; Esther M John; Beth Y Karlan; Sung-Won Kim; Irene Konstantopoulou; Ava Kwong; Anthony Laugé; Jong Won Lee; Fabienne Lesueur; Noura Mebirouk; Alfons Meindl; Emmanuelle Mouret-Fourme; Hannah Musgrave; Joanne Ngeow Yuen Yie; Dieter Niederacher; Sue K Park; Inge Sokilde Pedersen; Juliane Ramser; Susan J Ramus; Johanna Rantala; Muhammad U Rashid; Florian Reichl; Julia Ritter; Andreas Rump; Marta Santamariña; Claire Saule; Gunnar Schmidt; Rita K Schmutzler; Leigha Senter; Saba Shariff; Christian F Singer; Melissa C Southey; Dominique Stoppa-Lyonnet; Christian Sutter; Yen Tan; Soo Hwang Teo; Mary Beth Terry; Mads Thomassen; Marc Tischkowitz; Amanda E Toland; Diana Torres; Ana Vega; Sebastian A Wagner; Shan Wang-Gohrke; Barbara Wappenschmidt; Bernhard H F Weber; Drakoulis Yannoukakos; Amanda B Spurdle; Douglas F Easton; Georgia Chenevix-Trench; Laura Ottini; Antonis C Antoniou
Journal:  J Clin Oncol       Date:  2022-01-25       Impact factor: 50.717

3.  An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia.

Authors:  Jeanette Yuen; Si Ming Fung; Chin Leong Sia; Mallika Venkatramani; Tarryn Shaw; Eliza Courtney; Shao-Tzu Li; Jianbang Chiang; Veronique Kiak-Mien Tan; Benita Kiat-Tee Tan; Joanne Ngeow
Journal:  Hered Cancer Clin Pract       Date:  2020-10-23       Impact factor: 2.857

4.  The Genetic Education for Men (GEM) Trial: Development of Web-Based Education for Untested Men in BRCA1/2-Positive Families.

Authors:  Beth N Peshkin; Mary Kate Ladd; Claudine Isaacs; Hannah Segal; Aryana Jacobs; Kathryn L Taylor; Kristi D Graves; Suzanne C O'Neill; Marc D Schwartz
Journal:  J Cancer Educ       Date:  2021-02       Impact factor: 2.037

5.  "I wish that there was more info": characterizing the uncertainty experienced by carriers of pathogenic ATM and/or CHEK2 variants.

Authors:  Kathryn G Reyes; Cheyla Clark; Meredith Gerhart; Ainsley J Newson; Kelly E Ormond
Journal:  Fam Cancer       Date:  2021-04-15       Impact factor: 2.375

6.  Engaging Men With BRCA-Related Cancer Risks: Practical Advice for BRCA Risk Management From Male Stakeholders.

Authors:  Marleah Dean; Gemme Campbell-Salome; Emily A Rauscher
Journal:  Am J Mens Health       Date:  2020 May-Jun

7.  Investigating men's motivations to engage in genetic screening for BRCA1 and BRCA2 mutations.

Authors:  Anna Maria Annoni; Claudia Longhini
Journal:  PLoS One       Date:  2022-03-18       Impact factor: 3.240

  7 in total

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