Assessment of Alternative Counseling / Testing ~ Patient Education / Opinion / Preference
~ Genetics of Breast & Ovarian Cancer

Clients'/Patients'/Proband's assessment of nontraditional/alternative counseling/testing sessions, approaches, methods

List was last updated on Aug 4, 2019 @ 12:56 pm.


    • Research participants' experiences with return of genetic research results and preferences for web-based alternatives.
    • Gaieski JB, Patrick-Miller L, Egleston BL, Maxwell KN, Walser S, DiGiovanni L, Brower J, Fetzer D, Ganzak A, McKenna D, Long JM, Powers J, Stopfer JE, Nathanson KL, Domchek SM, Bradbury AR.
    • Mol Genet Genomic Med. 2019 Aug 3:e898. doi: 10.1002/mgg3.898. [Epub ahead of print]
    • A Simple Way to Make Genetic Counseling More Efficient and Accessible.
    • Markman M.
    • Medscape Oncology. 2019 Jun 14.

    Original research:

    Modified panel-based genetic counseling for ovarian cancer susceptibility: A randomized non-inferiority study.

    • A narrative overview of the patients' outcomes after multigene cancer panel testing, and a thorough evaluation of its implications for genetic counselling.
    • Esteban I, Lopez-Fernandez A, Balmaña J.
    • Eur J Med Genet. 2019 May;62(5):342-349. doi: 10.1016/j.ejmg.2018.11.027. Epub 2018 Nov 23.
    • Review
    • Evaluation of telephone genetic counselling to facilitate germline BRCA1/2 testing in women with high-grade serous ovarian cancer.
    • Tutty E, Petelin L, McKinley J, Young MA, Meiser B, Rasmussen VM, Forbes Shepherd R, James PA, Forrest LE.
    • Eur J Hum Genet. 2019 Apr 8. doi: 10.1038/s41431-019-0390-9. [Epub ahead of print]
    • Communication about genetic testing with breast and ovarian cancer patients: a scoping review.
    • Jacobs C, Patch C, Michie S.
    • Eur J Hum Genet. 2019 Apr;27(4):511-524. doi: 10.1038/s41431-018-0310-4. Epub 2018 Dec 20.
    • Modified panel-based genetic counseling for ovarian cancer susceptibility: A randomized non-inferiority study.
    • McCuaig JM, Tone AA, Maganti M, Romagnuolo T, Ricker N, Shuldiner J, Rodin G, Stockley T, Kim RH, Bernardini MQ.
    • Gynecol Oncol. 2019 Apr;153(1):108-115. doi: 10.1016/j.ygyno.2018.12.027. Epub 2019 Jan 10.

    Commentary: A Simple Way to Make Genetic Counseling More Efficient and Accessible. (Medscape Oncology)

    • Preferences for in-person disclosure: Patients declining telephone disclosure characteristics and outcomes in the multicenter Communication Of GENetic Test Results by Telephone study.
    • Beri N, Patrick-Miller LJ, Egleston BL, Hall MJ, Domchek SM, Daly MB, Ganschow P, Grana G, Olopade OI, Fetzer D, Brandt A, Chambers R, Clark DF, Forman A, Gaber R, Gulden C, Horte J, Long J, Lucas T, Madaan S, Mattie K, McKenna D, Montgomery S, Nielsen S, Powers J, Rainey K, Rybak C, Savage M, Seelaus C, Stoll J, Stopfer JE, Yao XS, Bradbury AR.
    • Clin Genet. 2019 Feb;95(2):293-301. doi: 10.1111/cge.13474. Epub 2018 Dec 7.
    • Knowledge, attitudes, and perceived barriers towards genetic testing across three rural Illinois communities.
    • Fogleman AJ, Zahnd WE, Lipka AE, Malhi RS, Ganai S, Delfino KR, Jenkins WD.
    • J Community Genet. 2019 Jan 23. doi: 10.1007/s12687-019-00407-w. [Epub ahead of print]
    • High patient satisfaction with a simplified BRCA1/2 testing procedure: long-term results of a prospective study.
    • Nilsson MP, Nilsson ED, Borg Å, Brandberg Y, Silfverberg B, Loman N.
    • Breast Cancer Res Treat. 2019 Jan;173(2):313-318. doi: 10.1007/s10549-018-5000-y. Epub 2018 Oct 11.
    • A narrative overview of the patients’ outcomes after multigene cancer panel testing: Thorough evaluation of its implications for genetic counselling.
    • Estebana I, Lopez-Fernandez A, Balmaña J.
    • Eur J Med Genet. 2018 Nov 23. pii: S1769-7212(18)30422-1. doi: 10.1016/j.ejmg.2018.11.027. [Epub ahead of print]
    • Review, Comment
    • Next-Generation Service Delivery: A Scoping Review of Patient Outcomes Associated with Alternative Models of Genetic Counseling and Genetic Testing for Hereditary Cancer.
    • McCuaig JM, Armel SR, Care M, Volenik A, Kim RH, Metcalfe KA.
    • Cancers (Basel). 2018 Nov 13;10(11). pii: E435. doi: 10.3390/cancers10110435.
    • Acceptability of Electronic Visits for Return of Research Results in the Mayo Clinic Biobank.
    • Olson JE, Ryu E, Lyke KJ, Bielinski SJ, Winkler EM, Hathcock MA, Bublitz JT, Takahashi PY, Cerhan JR.
    • Mayo Clin Proc Innov Qual Outcomes. 2018 Sep 15;2(4):352-358. doi: 10.1016/j.mayocpiqo.2018.07.004. eCollection 2018 Dec.
    • The Pink Underside: The Commercialization of Medical Risk Assessment and Decision-Making Tools for Hereditary Breast Cancer Risk.
    • Hesse-Biber S, Flynn B, Farrelly K.
    • Qual Health Res. 2018 Aug;28(10):1523-1538. doi: 10.1177/1049732318767395. Epub 2018 Apr 11.
    • Improving comprehension of genetic counseling for hereditary breast and ovarian cancer clients with a visual tool.
    • Tea MM, Tan YY, Staudigl C, Eibl B, Renz R, Asseryanis E, Berger A, Pfeiler G, Singer CF.
    • PLoS One. 2018 Jul 12;13(7):e0200559. doi: 10.1371/journal.pone.0200559. eCollection 2018.
    • Evaluation of a Streamlined Oncologist-Led BRCA Mutation Testing and Counseling Model for Patients With Ovarian Cancer.
    • Colombo N, Huang G, Scambia G, Chalas E, Pignata S, Fiorica J, Van Le L, Ghamande S, González-Santiago S, Bover I, Graña Suárez B, Green A, Huot-Marchand P, Bourhis Y, Karve S, Blakeley C.
    • J Clin Oncol. 2018 May 1;36(13):1300-1307. doi: 10.1200/JCO.2017.76.2781. Epub 2018 Mar 20.
    • Timing and Mode of Breast Care Nurse Consultation From the Patient's Perspective.
    • Brown J, Refeld G, Cooper A.
    • Oncol Nurs Forum. 2018 May 1;45(3):389-398. doi: 10.1188/18.ONF.389-398.
    • Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study.
    • Katapodi MC, Jung M, Schafenacker AM, Milliron KJ, Mendelsohn-Victor KE, Merajver SD, Northouse LL.
    • JMIR Cancer. 2018 Apr 13;4(1):e7. doi: 10.2196/cancer.9210.
    • Impact of a genetic counseling requirement prior to genetic testing.
    • Stenehjem DD, Au T, Sainski AM, Bauer H, Brown K, Lancaster J, Stevens V, Brixner DI.
    • BMC Health Serv Res. 2018 Mar 7;18(1):165. doi: 10.1186/s12913-018-2957-5.
    • NSGC Responds to U.S. Food and Drug Administration Approval of Direct-to-Consumer Cancer Test that Reports Three BRCA Mutations.
    • [No author given]
    • NSGC blog, 2018 Mar 6.

    FDA News Release: FDA authorizes, with special controls, direct-to-consumer test that reports three mutations in the BRCA breast cancer genes (U.S. Food & Drug Administration)

    • BRCAsearch: written pre-test information and BRCA1/2 germline mutation testing in unselected patients with newly diagnosed breast cancer.
    • Nilsson MP, Törngren T, Henriksson K, Kristoffersson U, Kvist A, Silfverberg B, Borg Å, Loman N.
    • Breast Cancer Res Treat. 2018 Feb;168(1):117-126. doi: 10.1007/s10549-017-4584-y. Epub 2017 Nov 21.
    • Examination of the Patient-Focused Impact of Cancer Telegenetics Among a Rural Population: Comparison with Traditional In-Person Services.
    • Solomons NM, Lamb AE, Lucas FL, McDonald EF, Miesfeldt S.
    • Telemed J E Health. 2018 Feb;24(2):130-138. doi: 10.1089/tmj.2017.0073. Epub 2017 Jul 21.
    • Comparing Outcomes of Genetic Counseling Options in Breast and Ovarian Cancer: An Integrative Review.
    • Fournier DM, Bazzell AF, Dains JE.
    • Oncol Nurs Forum. 2018 Jan 1;45(1):96-105. doi: 10.1188/18.ONF.96-105.
    • Review
    • Genetic Testing in a Population-Based Sample of Breast and Ovarian Cancer Survivors from the REACH Randomized Trial: Cost Barriers and Moderators of Counseling Mode.
    • Steffen LE, Du R, Gammon A, Mandelblatt JS, Kohlmann WK, Lee JH, Buys SS, Stroup AM, Campo RA, Flores KG, Vicuña B, Schwartz MD, Kinney AY.
    • Cancer Epidemiol Biomarkers Prev. 2017 Dec;26(12):1772-1780. doi: 10.1158/1055-9965.EPI-17-0389. Epub 2017 Sep 29.
    • Rapid genetic counseling and testing in newly diagnosed breast cancer: Patients' and health professionals' attitudes, experiences, and evaluation of effects on treatment decision making.
    • Wevers MR, Aaronson NK, Bleiker EMA, Hahn DEE, Brouwer T, van Dalen T, Theunissen EB, van Ooijen B, de Roos MA, Borgstein PJ, Vrouenraets BC, Vriens E, Bouma WH, Rijna H, Vente JP, Kuenen MA, van der Sanden-Melis J, Witkamp AJ, Rutgers EJT, Verhoef S, Ausems MGEM.
    • J Surg Oncol. 2017 Dec;116(8):1029-1039. doi: 10.1002/jso.24763. Epub 2017 Jul 13.
    • Impact of Panel Gene Testing for Hereditary Breast and Ovarian Cancer on Patients.
    • Lumish HS, Steinfeld H, Koval C, Russo D, Levinson E, Wynn J, Duong J, Chung WK.
    • J Genet Couns. 2017 Oct;26(5):1116-1129. doi: 10.1007/s10897-017-0090-y. Epub 2017 Mar 29.

    Letter:

    Anxiety and Hereditary Testing Results.

    Letter, Reply:

    Response to Dr. Sorscher.

    • Anxiety and Hereditary Testing Results.
    • Sorscher S.
    • J Genet Couns. 2017 Oct;26(5):1162–1163. doi: 10.1007/s10897-017-0109-4. Epub 2017 May 24.
    • Letter

    Impact of Panel Gene Testing for Hereditary Breast and Ovarian Cancer on Patients.

    Letter, Reply:

    Response to Dr. Sorscher.

    • Randomized Noninferiority Trial of Telephone vs In-Person Genetic Counseling for Hereditary Breast and Ovarian Cancer: A 12-Month Follow-Up.
    • Interrante MK, Segal H, Peshkin BN, Valdimarsdottir HB, Nusbaum R, Similuk M, DeMarco T, Hooker G, Graves K, Isaacs C, Wood M, McKinnon W, Garber J, McCormick S, Heinzmann J, Kinney AY, Schwartz MD.
    • JNCI Cancer Spectr. 2017 Sep;1(1):pkx002. doi: 10.1093/jncics/pkx002. Epub 2017 Sep 22.
    • Population screening for BRCA1/BRCA2 founder mutations in Ashkenazi Jews: proactive recruitment compared with self-referral.
    • Lieberman S, Tomer A, Ben-Chetrit A, Olsha O, Strano S, Beeri R, Koka S, Fridman H, Djemal K, Glick I, Zalut T, Segev S, Sklair M, Kaufman B, Lahad A, Raz A, Levy-Lahad E.
    • Genet Med. 2017 Jul;19(7):754-762. doi: 10.1038/gim.2016.182. Epub 2016 Dec 8.
    • Streamlined genetic education is effective in preparing women newly diagnosed with breast cancer for decision making about treatment-focused genetic testing: a randomized controlled noninferiority trial.
    • Quinn VF, Meiser B, Kirk J, Tucker KM, Watts KJ, Rahman B, Peate M, Saunders C, Geelhoed E, Gleeson M, Barlow-Stewart K, Field M, Harris M, Antill YC, Cicciarelli L, Crowe K, Bowen MT, Mitchell G
    • Genet Med. 2017 Apr;19(4):448-456. doi: 10.1038/gim.2016.130. Epub 2016 Sep 29.
    • Hereditary breast and ovarian cancer: successful systematic implementation of a group approach to genetic counselling.
    • Benusiglio PR, Di Maria M, Dorling L, Jouinot A, Poli A, Villebasse S, Le Mentec M, Claret B, Boinon D, Caron O.
    • Fam Cancer. 2017 Jan;16(1):51-56. doi: 10.1007/s10689-016-9929-x.
    • Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives.
    • de Geus E, Eijzenga W, Menko FH, Sijmons RH, de Haes HC, Aalfs CM, Smets EM.
    • J Genet Couns. 2016 Dec;25(6):1179-1187. Epub 2016 Apr 22.

    Webinar: June 2016 Webinar: Spreading the word: a review of two family communication intervention studies. (NSGC. Cancer SIG. Webinar Recordings. 2016 Jun 29.)

    • Patient and genetic counselor perceptions of in-person versus telephone genetic counseling for hereditary breast/ovarian cancer.
    • Jacobs AS, Schwartz MD, Valdimarsdottir H, Nusbaum RH, Hooker GW, DeMarco TA, Heinzmann JE, McKinnon W, McCormick SR, Davis C, Forman AD, Lebensohn AP, Dalton E, Tully DM, Graves KD, Similuk M, Kelly S, Peshkin BN.
    • Fam Cancer. 2016 Oct;15(4):529-39. doi: 10.1007/s10689-016-9900-x.
    • Communicating genetic test results within the family: Is it lost in translation? A survey of relatives in the randomized six-step study.
    • Daly MB, Montgomery S, Bingler R, Ruth K.
    • Fam Cancer. 2016 Oct;15(4):697-706. doi: 10.1007/s10689-016-9889-1.

    Comments on NSGC Discussion Forum Cancer SIG

    Subject: Register for June Journal Club; Reminder, webinar this Friday

    Webinar: June 2016 Webinar: Spreading the word: a review of two family communication intervention studies (NSGC Cancer SIG: Webinar Recordings)

    • The effectiveness of argumentation in tutorial dialogues with an Intelligent Tutoring System for genetic risk of breast cancer.
    • Cedillos-Whynott EM, Wolfe CR, Widmer CL, Brust-Renck PG, Weil A, Reyna VF.
    • Behav Res Methods. 2016 Sep;48(3):857-68. doi: 10.3758/s13428-015-0681-1.
    • Review
    • Cluster-randomised non-inferiority trial comparing DVD-assisted and traditional genetic counselling in systematic population testing for BRCA1/2 mutations.
    • Manchanda R, Burnell M, Loggenberg K, Desai R, Wardle J, Sanderson SC, Gessler S, Side L, Balogun N, Kumar A, Dorkins H, Wallis Y, Chapman C, Tomlinson I, Taylor R, Jacobs C, Legood R, Raikou M, McGuire A, Beller U, Menon U, Jacobs I.
    • J Med Genet. 2016 Jul;53(7):472-80. doi: 10.1136/jmedgenet-2015-103740. Epub 2016 Mar 18.
    • June 2016 Webinar: Spreading the word: a review of two family communication intervention studies.
    • Ilana Solomon.
    • NSGC. Cancer SIG. Webinar Recordings. 2016 Jun 29.

    Communicating genetic test results within the family: Is it lost in translation? A survey of relatives in the randomized six-step study.

    Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives.

    • Predictive Genetic Testing and Alternatives to Face to Face Results Disclosure: A Retrospective Review of Patients Preference for Alternative Modes of BRCA 1 and 2 Results Disclosure in the Republic of Ireland.
    • O'Shea R, Meany M, Carroll C, Cody N, Healy D, Green A, Lynch SA.
    • J Genet Couns. 2016 Jun;25(3):422-31. doi: 10.1007/s10897-015-9887-8. Epub 2015 Sep 26.
    • Patient Perceptions of Telephone vs. In-Person BRCA1/BRCA2 Genetic Counseling.
    • Peshkin BN, Kelly S, Nusbaum RH, Similuk M, DeMarco TA, Hooker GW, Valdimarsdottir HB, Forman AD, Joines JR, Davis C, McCormick SR, McKinnon W, Graves KD, Isaacs C, Garber J, Wood M, Jandorf L, Schwartz MD.
    • J Genet Couns. 2016 Jun;25(3):472-82. doi: 10.1007/s10897-015-9897-6. Epub 2015 Oct 12.
    • Peer support and additional information in group medical consultations (GMCs) for BRCA1/2 mutation carriers: A randomized controlled trial.
    • Visser A, van Laarhoven HW, Woldringh GH, Hoogerbrugge N, Prins JB.
    • Acta Oncol. 2016 Feb;55(2):178-87. doi: 10.3109/0284186X.2015.1049292. Epub 2015 Jun 26.
    • Disparities in uptake of BRCA1/2 genetic testing in a randomized trial of telephone counseling.
    • Butrick M, Kelly S, Peshkin BN, Luta G, Nusbaum R, Hooker GW, Graves K, Feeley L, Isaacs C, Valdimarsdottir HB, Jandorf L, DeMarco T, Wood M, McKinnon W, Garber J, McCormick SR, Schwartz MD.
    • Genet Med. 2015 Jun;17(6):467-475. doi: 10.1038/gim.2014.125. Epub 2014 Sep 18.
    • Pilot Testing of a Psycho-educational Telephone Intervention for Women Receiving Uninformative BRCA1/2 Genetic Test Results.
    • Maheu C, Meschino WS, Hu W, Honeyford J, Ambus I, Kidd M, Benea A, Gao X, Azadbakhsh M, Rochefort C, Esplen MJ.
    • Can J Nurs Res. 2015 Mar;47(1):53-71. doi: 10.1177/084456211504700105.
    • Differences in BRCA counseling and testing practices based on ordering provider type.
    • Cragun D, Camperlengo L, Robinson E, Caldwell M, Kim J, Phelan C, Monteiro AN, Vadaparampil ST, Sellers TA, Pal T.
    • Genet Med. 2015 Jan;17(1):51-57. doi: 10.1038/gim.2014.75. Epub 2014 Jun 12.

    Press: Involving a genetic health care professional may improve quality, reduce unnecessary testing. (Science Daily)

    Press: Survey: Genetic Counseling Leads Some Patients to Cheaper BRCA Tests. (GenomeWeb)

    Blog post: Survey: Genetic Counseling Leads Some Patients to Cheaper BRCA Tests. (Yale Cancer Genetic Counseling)

    • Follow-up effects of a tailored pre-counseling website with question prompt in breast cancer genetic counseling.
    • Albada A, van Dulmen S, Spreeuwenberg P, Ausems MG.
    • Patient Educ Couns. 2015 Jan;98(1):69-76. doi: 10.1016/j.pec.2014.10.005. Epub 2014 Oct 17.
    • Randomized Controlled Trial of a Telephone-Based Peer-Support Program for Women Carrying a BRCA1 or BRCA2 Mutation: Impact on Psychological Distress.
    • White VM, Young MA, Farrelly A, Meiser B, Jefford M, Williamson E, Ieropoli S, Duffy J, Winship I.
    • J Clin Oncol. 2014 Dec 20;32(36):4073-80. doi: 10.1200/JCO.2013.54.1607. Epub 2014 Nov 17.
    • More breast cancer patients prefer BRCA-mutation testing without prior face-to-face genetic counseling.
    • Sie AS, van Zelst-Stams WA, Spruijt L, Mensenkamp AR, Ligtenberg MJ, Brunner HG, Prins JB, Hoogerbrugge N.
    • Fam Cancer. 2014 Jun;13(2):143-51. doi: 10.1007/s10689-013-9686-z.
    • Implementation and outcomes of telephone disclosure of clinical BRCA1/2 test results.
    • Patrick-Miller L, Egleston BL, Daly M, Stevens E, Fetzer D, Forman A, Bealin L, Rybak C, Peterson C, Corbman M, Bradbury AR.
    • Patient Educ Couns. 2013 Dec;93(3):413-9. doi: 10.1016/j.pec.2013.08.009. Epub 2013 Aug 19.
    • The introduction of a choice to learn pre-symptomatic DNA test results for BRCA or Lynch syndrome either face-to-face or by letter.
    • Voorwinden JS, Jaspers JP, ter Beest JG, Kievit Y, Sijmons RH, Oosterwijk JC.
    • Clin Genet. 2012 May;81(5):421-9. doi: 10.1111/j.1399-0004.2011.01811.x. Epub 2011 Dec 13.
    • Effects of a pre-visit educational website on information recall and needs fulfilment in breast cancer genetic counselling, a randomized controlled trial.
    • Albada A, van Dulmen S, Bensing JM, Ausems MG.
    • Breast Cancer Res. 2012 Mar 6;14(2):R37.

    Retraction:

    Retraction: Effects of a pre-visit educational website on information recall and needs fulfilment in breast cancer genetic counselling, a randomized controlled trial.