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Familial Cancer

, Volume 17, Issue 3, pp 351–360 | Cite as

Information and support needs of young women regarding breast cancer risk and genetic testing: adapting effective interventions for a novel population

  • Suzanne C. O’Neill
  • Chalanda Evans
  • Rebekah J. Hamilton
  • Beth N. Peshkin
  • Claudine Isaacs
  • Sue Friedman
  • Kenneth P. Tercyak
Original Article

Abstract

Young women from hereditary breast and ovarian cancer (HBOC) families face a unique set of challenges in managing their HBOC risk, where obtaining essential information to inform decision making is key. Previous work suggests that this need for specific health information also comes at a time of heightened distress and greater individuation from family. In this report, we describe our adaptation of a previously-studied behavioral intervention for this population, utilizing a systematic approach outlined by the Centers for Disease Control and Prevention. First, we assessed the information needs and levels of distress in this population and correlates of this distress. These data then were used to inform the adaptation and piloting of a three-session telephone-based peer coaching intervention. One hundred young women (M age = 25 years) who were first or second degree relatives of BRCA1/2 mutation carriers participated. Sixty-three percent of the sample endorsed unmet HBOC information needs and they, on average, reported moderate levels of cancer-related distress (M = 21.9, SD = 14.6). Greater familial disruption was associated with greater cancer-related distress in multivariable models (p < .05). Ten women who participated in the survey completed the intervention pilot. They reported lower distress from pre- to post- (15.8 vs. 12.0), as well as significantly lower decisional conflict (p < .05) and greater endorsement of an array of healthy coping strategies (i.e., active coping, instrumental coping, positive reframing, planning, p’s < .05). Our survey results suggest that young adult women from HBOC families have unmet cancer genetic information and support needs. Our pilot intervention was able to reduce levels of decisional conflict and promote the use of effective coping strategies. This approach needs to be further tested in a larger randomized trial.

Keywords

BRCA Breast Women Intervention Peer Telephone 

Notes

Acknowledgements

This work was supported in part by Public Health Service Grant R03CA178763 (SCO) from the National Cancer Institute, a CDC Cooperative Agreement U58DP005408 (KPT and Sharsheret), and the Nontherapeutic Subject Registry and Familial Cancer Registry of Georgetown Lombardi Comprehensive Cancer Center through Comprehensive Cancer Center Support Grant P30CA051008. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Manuscript preparation was supported, in part, by MRSG-10-110-01 from the American Cancer Society (SCO).

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Copyright information

© Springer Science+Business Media B.V., part of Springer Nature 2017

Authors and Affiliations

  • Suzanne C. O’Neill
    • 1
  • Chalanda Evans
    • 1
  • Rebekah J. Hamilton
    • 2
  • Beth N. Peshkin
    • 1
  • Claudine Isaacs
    • 3
  • Sue Friedman
    • 4
  • Kenneth P. Tercyak
    • 1
  1. 1.Lombardi Comprehensive Cancer CenterGeorgetown University Medical CenterWashingtonUSA
  2. 2.Armour Academic Center, College of NursingRush UniversityChicagoUSA
  3. 3.Lombardi Comprehensive Cancer CenterGeorgetown UniversityWashingtonUSA
  4. 4.FORCE, Inc.TampaUSA

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