Barriers in Identification and Referral to Genetic Counseling for Familial Cancer Risk: The Perspective of Genetic Service Providers

  • Sharon J. Rolnick
  • Alanna K. Rahm
  • Jody M. Jackson
  • Larissa Nekhlyudov
  • Katrina A. B. Goddard
  • Terry Field
  • Catherine McCarty
  • Cynthia Nakasato
  • Douglas Roblin
  • Christopher P. Anderson
  • Rodolfo Valdez
Original Research

Abstract

The purpose of this study was to obtain genetic counselors’ perspectives about the identification of appropriate patients and barriers to referral of high-risk patients for cancer genetic counseling services. Genetic service providers from eight integrated health systems were surveyed. Data analysis included descriptive statistics. Twenty-eight of 40 potential participants responded (70%). Referrals for familial cancer risk assessment overwhelmingly came from providers (89%); only 10% were self-referrals. Use of guidelines to assist providers with referral was reported by 46% of the respondents. Genetic service providers perceived patient barriers to seeking genetic counseling after referral included: risk evaluation viewed as a non-priority (72%), concerns about impact on insurability (52%), distance to appointments (48%), lack of insurance (44%), lack of patient/provider knowledge about the value of genetic counseling (36%), discouragement by family members (28%), and fear (20%). The best approaches suggested by respondents to increase appropriate referrals were attending meetings and giving presentations to oncologists, surgeons, primary care and gynecologists. The genetic service providers reported several barriers to the referral and use of genetic counseling. This finding is consistent with current literature from the providers’ perspective. Our survey adds the genetic service providers’ perspective and identifies areas of opportunity for further research and intervention as few of the perceived barriers are being addressed through current educational efforts.

Keywords

Genetic counseling Genetic predisposition to disease Genetic screening Neoplasms Referral and consultation 

Notes

Acknowledgements

This study was funded by the National Cancer Institute, contract 5U19 CA079689, “Increasing the Effectiveness of Cancer Control Interventions” (Edward H. Wagner, MD, MPH, Principal Investigator), which provides financial support for the HMO Cancer Research Network (CRN). We want to acknowledge the members of the CRN Family History Scientific Interest Group who contributed to the conceptual design of this project and/or provided input on this manuscript, particularly Andrea F. Patenaude, PhD from the Dana Farber Cancer Institute (Boston, MA). We also want to thank the genetics professionals who participated in the survey. The corresponding author may be contacted to request a copy of the full survey.

Confict of Interest

No disclosures.

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Copyright information

© National Society of Genetic Counselors, Inc. 2011

Authors and Affiliations

  • Sharon J. Rolnick
    • 1
  • Alanna K. Rahm
    • 2
  • Jody M. Jackson
    • 1
  • Larissa Nekhlyudov
    • 3
  • Katrina A. B. Goddard
    • 4
  • Terry Field
    • 5
  • Catherine McCarty
    • 6
  • Cynthia Nakasato
    • 7
  • Douglas Roblin
    • 8
  • Christopher P. Anderson
    • 1
  • Rodolfo Valdez
    • 9
  1. 1.HealthPartners Research FoundationMinneapolisUSA
  2. 2.Institute for Health ResearchKaiser PermanenteDenverUSA
  3. 3.Department of Population Medicine, Harvard Medical School and Department of MedicineHarvard Vanguard Medical AssociatesBostonUSA
  4. 4.Center for Health ResearchKaiser Permanente NorthwestPortlandUSA
  5. 5.Meyers Primary Care InstituteWorcesterUSA
  6. 6.Marshfield Clinic Research FoundationMarshfieldUSA
  7. 7.Kaiser Permanente Center for Health ResearchHonoluluUSA
  8. 8.Center for Health Research/SoutheastAtlantaUSA
  9. 9.Office of Public Health Genomics, Office of Surveillance, Epidemiology and Laboratory ServicesCenters for Disease Control and PreventionAtlantaUSA

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