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Universal screening for Lynch syndrome among patients with colorectal cancer: patient perspectives on screening and sharing results with at-risk relatives

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Abstract

Universal screening for Lynch syndrome (LS) among all cases of colorectal cancer (CRC) could increase the diagnosis of LS and reduce morbidity and mortality of LS-associated cancers. Given universal screening includes all patients, irrespective of high risk factors such early age at onset or family history of CRC, it is important to understand perspectives of all patients and not just those at high risk. As part of a study to assess the feasibility and implementation of universal screening, 189 patients newly diagnosed with CRC were surveyed about their interest in screening for LS and communication of results with at-risk family members. Overall, participants responded positively regarding screening for LS, with most wanting to know their genetic risks in general (86%) and risk of hereditary CRC (93%). Prior to receiving screening results, most participants stated they intended to share their screening results with parents (89%), siblings (96%), and children (96%). Of the 28 participants who received a positive LS screening result, 26 (93%) reported sharing their result with at least one first-degree family member. Interest in screening for LS and communication of screening results with family members was not associated with high risk factors. This study indicates that patients are interested in being screened for LS and that sharing information on the risk of LS with at-risk family members is not a significant barrier. These findings provide novel insight into patient perspectives about screening for LS and can guide successful implementation of universal screening programs.

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Acknowledgements

The authors would like to thank Elizabeth Hess for her editorial support as well as all participants who made this work possible.

Funding

This work was supported through a grant by the National Institute of Health: 5R01CA140377 (Goddard).

Author information

Authors and Affiliations

  1. Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA

    Jessica Ezzell Hunter, Kathleen A. Arnold, Jennifer E. Cook, Jamilyn Zepp, Marian J. Gilmore, Alan F. Rope, James V. Davis, Kellene M. Bergen, Elizabeth Esterberg, Kristin R. Muessig, Jacob Reiss & Katrina A. B. Goddard

  2. Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

    Susan K. Peterson

  3. Dana-Farber Cancer Institute, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, USA

    Sapna Syngal

  4. Departments of Family Medicine and Community Health, Reproductive Biology, and Oncology, Case Western Reserve University, Cleveland, OH, USA

    Louise Acheson

  5. Vanderbilt Hereditary Cancer Program, Department of Medicine, Vanderbilt-Ingram Cancer Center, Vanderbilt University, Nashville, TN, USA

    Georgia Wiesner

Authors
  1. Jessica Ezzell Hunter
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  2. Kathleen A. Arnold
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  3. Jennifer E. Cook
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  6. Alan F. Rope
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  13. Louise Acheson
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  14. Georgia Wiesner
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  15. Jacob Reiss
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  16. Katrina A. B. Goddard
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Correspondence to Jessica Ezzell Hunter.

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The authors declare that they have no conflict of interest.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in this study.

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Hunter, J.E., Arnold, K.A., Cook, J.E. et al. Universal screening for Lynch syndrome among patients with colorectal cancer: patient perspectives on screening and sharing results with at-risk relatives. Familial Cancer 16, 377–387 (2017). https://doi.org/10.1007/s10689-017-9972-2

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  • DOI: https://doi.org/10.1007/s10689-017-9972-2

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