Literature DB >> 22864682

A multi-case report of the pathways to and through genetic testing and cancer risk management for BRCA mutation-positive women aged 18-25.

Lindsey M Hoskins1, Allison Werner-Lin.   

Abstract

Much of the extant literature addressing the psychosocial aspects of BRCA1/2 mutation testing and risk management aggregates mutation carriers of all ages in study recruitment, data analysis, and interpretation. This analytic strategy does not adequately address the needs of the youngest genetic testing consumers, i.e., women aged 18-25. Despite low absolute cancer risk estimates before age 30, BRCA1/2 mutation-positive women aged 18-25 feel vulnerable to a cancer diagnosis but find themselves in a management quandary because the clinical utility of screening and prevention options are not yet well defined for such young carriers. We present three cases, selected from a larger study of 32 BRCA1/2 mutation-positive women who completed or considered genetic testing before age 25, to demonstrate the unique developmental, relational and temporal influences, as well as the challenges, experienced by very young BRCA mutation-positive women as they complete genetic testing and initiate cancer risk management. The first case describes the maturation of a young woman whose family participated in a national cancer registry. The second addresses the experiences and expectations of a young woman who completed genetic testing after learning that her unaffected father was a mutation carrier. The third case highlights the experiences of a young woman parentally bereaved in childhood, who presented for genetic counseling and testing due to intense family pressure. Together, these cases suggest that BRCA1/2-positive women aged 18-25 are challenged to reconcile their burgeoning independence from their families with risk-related support needs. Loved ones acting in ways meant to care for these young women may inadvertently apply pressure, convoluting family support dynamics and autonomous decision-making. Ongoing support from competent healthcare professionals will enable these young women to remain informed and receive objective counsel about their risk-management decisions.

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Year:  2012        PMID: 22864682      PMCID: PMC3529763          DOI: 10.1007/s10897-012-9521-y

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


  27 in total

1.  Emerging adulthood. A theory of development from the late teens through the twenties.

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2.  Exploring family relationships in cancer risk counseling using the genogram.

Authors:  M Daly; J Farmer; C Harrop-Stein; S Montgomery; M Itzen; J W Costalas; A Rogatko; S Miller; A Balshem; D Gillespie
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  1999-04       Impact factor: 4.254

3.  Culture and conceptions of adulthood.

Authors:  Jeffrey Jensen Arnett; Nancy L Galambos
Journal:  New Dir Child Adolesc Dev       Date:  2003

4.  Combining case study research and systems theory as a heuristic model.

Authors:  Sophie Anaf; Claire Drummond; Lorraine A Sheppard
Journal:  Qual Health Res       Date:  2007-12

5.  Disclosure of Positive BRCA1/2-Mutation Status in Young Couples: The Journey From Uncertainty to Bonding Through Partner Support.

Authors:  Lindsey M Hoskins; Kevin Roy; June A Peters; Jennifer T Loud; Mark H Greene
Journal:  Fam Syst Health       Date:  2008       Impact factor: 1.950

6.  'Cancer doesn't have an age': genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18-24.

Authors:  Allison Werner-Lin; Lindsey M Hoskins; Maya H Doyle; Mark H Greene
Journal:  Health (London)       Date:  2012-04-30

7.  Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study.

Authors:  Iris van Oostrom; Hanne Meijers-Heijboer; Litanja N Lodder; Hugo J Duivenvoorden; Arthur R van Gool; Caroline Seynaeve; Conny A van der Meer; Jan G M Klijn; Bert N van Geel; Curt W Burger; Juriy W Wladimiroff; Aad Tibben
Journal:  J Clin Oncol       Date:  2003-10-15       Impact factor: 44.544

8.  Danger zones: risk perceptions of young women from families with hereditary breast and ovarian cancer.

Authors:  Allison V Werner-Lin
Journal:  Fam Process       Date:  2007-09

9.  Anticipatory loss and early mastectomy for young female BRCA1/2 mutation carriers.

Authors:  Lindsey M Hoskins; Mark H Greene
Journal:  Qual Health Res       Date:  2012-08-27

10.  Meta-analysis of BRCA1 and BRCA2 penetrance.

Authors:  Sining Chen; Giovanni Parmigiani
Journal:  J Clin Oncol       Date:  2007-04-10       Impact factor: 44.544

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  10 in total

Review 1.  Personal utility in genomic testing: a systematic literature review.

Authors:  Jennefer N Kohler; Erin Turbitt; Barbara B Biesecker
Journal:  Eur J Hum Genet       Date:  2017-03-15       Impact factor: 4.246

2.  Involvement and Influence of Healthcare Providers, Family Members, and Other Mutation Carriers in the Cancer Risk Management Decision-Making Process of BRCA1 and BRCA2 Mutation Carriers.

Authors:  Athena Puski; Shelly Hovick; Leigha Senter; Amanda Ewart Toland
Journal:  J Genet Couns       Date:  2018-03-29       Impact factor: 2.537

Review 3.  Life with a Primary Immune Deficiency: a Systematic Synthesis of the Literature and Proposed Research Agenda.

Authors:  Morgan N Similuk; Angela Wang; Michael J Lenardo; Lori H Erby
Journal:  J Clin Immunol       Date:  2016-02-12       Impact factor: 8.317

4.  Experiences of Women Who Underwent Predictive BRCA 1/2 Mutation Testing Before the Age of 30.

Authors:  Kate Brunstrom; Alexandra Murray; Marion McAllister
Journal:  J Genet Couns       Date:  2015-05-19       Impact factor: 2.537

5.  A survey of genetic counselors about the needs of 18-25 year olds from families with hereditary breast and ovarian cancer syndrome.

Authors:  Allison Werner-Lin; Rachel Ratner; Lindsey M Hoskins; Caroline Lieber
Journal:  J Genet Couns       Date:  2014-07-12       Impact factor: 2.537

6.  Talking with Children About Adult-Onset Hereditary Cancer Risk: A Developmental Approach for Parents.

Authors:  Allison Werner-Lin; Shana L Merrill; Amanda C Brandt; Rachel E Barnett; Ellen T Matloff
Journal:  J Genet Couns       Date:  2018-01-30       Impact factor: 2.537

7.  Disparities in uptake of BRCA1/2 genetic testing in a randomized trial of telephone counseling.

Authors:  Morgan Butrick; Scott Kelly; Beth N Peshkin; George Luta; Rachel Nusbaum; Gillian W Hooker; Kristi Graves; Lisa Feeley; Claudine Isaacs; Heiddis B Valdimarsdottir; Lina Jandorf; Tiffani DeMarco; Marie Wood; Wendy McKinnon; Judy Garber; Shelley R McCormick; Marc D Schwartz
Journal:  Genet Med       Date:  2014-09-18       Impact factor: 8.822

8.  Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support.

Authors:  Chalanda Evans; Rebekah J Hamilton; Kenneth P Tercyak; Beth N Peshkin; Kantoniony Rabemananjara; Claudine Isaacs; Suzanne C O'Neill
Journal:  Healthcare (Basel)       Date:  2016-06-28

9.  Genetic counseling and testing for hereditary cancer risk in young adult women: Facilitating autonomy and informed decision making is key.

Authors:  Beth N Peshkin; Susan T Vadaparampil; Lindsey M Hoskins; Suzanne M O'Neill; James F Barter
Journal:  Gynecol Oncol Rep       Date:  2015-10-20

10.  A proposal of a new evaluation framework towards implementation of genetic tests.

Authors:  Erica Pitini; Elvira D'Andrea; Corrado De Vito; Annalisa Rosso; Brigid Unim; Carolina Marzuillo; Antonio Federici; Emilio Di Maria; Paolo Villari
Journal:  PLoS One       Date:  2019-08-05       Impact factor: 3.240

  10 in total

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