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A model for patient-direct screening and referral for familial cancer risk

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Abstract

Patients at increased familial risk of cancer are sub-optimally identified and referred for genetic counseling. We describe a systematic model for information collection, screening and referral for hereditary cancer risk. Individuals from three different clinical and research populations were screened for hereditary cancer risk using a two-tier process: a 7-item screener followed by review of family history by a genetic counselor and application of published criteria. A total of 869 subjects participated in the study; 769 in this high risk population had increased familial cancer risk based on the screening questionnaire. Of these eligible participants, 500 (65.0 %) provided family histories and 332 (66.4 %) of these were found to be at high risk of a hereditary cancer syndrome, 102 (20.4 %) at moderate familial cancer risk, and 66 (13.2 %) at average risk. Three months following receipt of the risk result letter, nearly all respondents found the process at least somewhat helpful (98.4 %). All participants identified as high-risk were mailed a letter recommending genetic counseling and were provided appointment tools. After 1 year, only 13 (7.3 %) of 179 high risk respondents reported pursuit of recommended genetic counseling. Participants were willing to provide family history information for the purposes of risk assessment; however, few patients pursued recommended genetic services. This suggests that cancer family history registries are feasible and viable but that further research is needed to increase the uptake of genetic counseling.

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Abbreviations

HCS:

Hereditary cancer syndrome

WHC:

Women’s Health Clinic

FTR:

Fairview Tumor Registry

MCCI:

Minnesota Colorectal Cancer Initiative

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Acknowledgments

The authors wish to thank the Health Studies Section of the University of Minnesota, School of Public Health for the data acquisition and management services as well as Kristin Oehlke, M.S., C.G.C. and members of the William C. Bernstein, M.D. Familial Cancer Registry advisory board who provided expertise in preparation of the original study design and execution. This study was funded by the William C. Bernstein, M.D. Grant and the University of Minnesota Masonic Cancer Center.

Author contributions

K.B.N.: Primary study design, data collection, risk assessment of subjects and writing. M.G.: Provision of subjects, manuscript editing, study design committee member. R.I.V.: Statistician, results and figure development, manuscript reviewer. T.C.: Co-Primary Investigator and study design committee member. A.L.: Study design, risk assessment analysis, author of methods section. A.B.: Risk assessment of subjects, QA checking of risk assessments. R.D.M.: Principal Investigator, study development, manuscript editing. All authors read and approved final manuscript.

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Authors and Affiliations

  1. Masonic Cancer Center, University of Minnesota, 420 Delaware Street SE, MMC 450, Minneapolis, MN, 55455, USA

    Kristin B. Niendorf & Rachel Isaksson Vogel

  2. Division of Gynecologic Oncology, Department of Obstetrics, Gynecology and Women’s Health, University of Minnesota, Minneapolis, MN, USA

    Melissa A. Geller

  3. Division of Environmental Health Sciences, School of Public Health, University of Minnesota, Minneapolis, MN, USA

    Timothy R. Church

  4. Minnesota Oncology, Woodbury, MN, USA

    Anna Leininger

  5. Maternal-Fetal Medicine Center, Burnsville, MN, USA

    Angela Bakke

  6. Division of Colon and Rectal Surgery, Department of Surgery, University of Minnesota, Minneapolis, MN, USA

    Kristin B. Niendorf & Robert D. Madoff

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  1. Kristin B. Niendorf
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  2. Melissa A. Geller
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  3. Rachel Isaksson Vogel
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Correspondence to Kristin B. Niendorf.

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Niendorf, K.B., Geller, M.A., Vogel, R.I. et al. A model for patient-direct screening and referral for familial cancer risk. Familial Cancer 15, 707–716 (2016). https://doi.org/10.1007/s10689-016-9912-6

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