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Familial Cancer
Published in: Familial Cancer 3/2017

01-07-2017 | Original Article

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

Authors: 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, Susan K. Peterson, Sapna Syngal, Louise Acheson, Georgia Wiesner, Jacob Reiss, Katrina A. B. Goddard

Published in: Familial Cancer | Issue 3/2017

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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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Metadata
Title
Universal screening for Lynch syndrome among patients with colorectal cancer: patient perspectives on screening and sharing results with at-risk relatives
Authors
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
Susan K. Peterson
Sapna Syngal
Louise Acheson
Georgia Wiesner
Jacob Reiss
Katrina A. B. Goddard
Publication date
01-07-2017
Publisher
Springer Netherlands
Published in
Familial Cancer / Issue 3/2017
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI
https://doi.org/10.1007/s10689-017-9972-2

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