Universal screening for Lynch syndrome among patients with colorectal cancer: patient perspectives on screening and sharing results with at-risk relatives.
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.
Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA. Jessica.E.Hunter@kpchr.org.
Jessica Ezzell
JE
Hunter
Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA.
Kathleen A
KA
Arnold
Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA.
Jennifer E
JE
Cook
Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA.
Jamilyn
J
Zepp
Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA.
Marian J
MJ
Gilmore
Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA.
Alan F
AF
Rope
Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA.
James V
JV
Davis
Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA.
Kellene M
KM
Bergen
Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA.
Elizabeth
E
Esterberg
Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA.
Kristin R
KR
Muessig
Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
Susan K
SK
Peterson
Dana-Farber Cancer Institute, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.
Sapna
S
Syngal
Departments of Family Medicine and Community Health, Reproductive Biology, and Oncology, Case Western Reserve University, Cleveland, OH, USA.
Louise
L
Acheson
Vanderbilt Hereditary Cancer Program, Department of Medicine, Vanderbilt-Ingram Cancer Center, Vanderbilt University, Nashville, TN, USA.
Georgia
G
Wiesner
Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA.
Jacob
J
Reiss
Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Avenue, Portland, OR, 97229, USA.
Katrina A B
KAB
Goddard
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015179:Colorectal Neoplasms / Q000235:genetics*; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000175:diagnosis* / Q000235:genetics; D005190:Family / Q000523:psychology; D005260:Female; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D006801:Humans; D008297:Male; D008403:Mass Screening / Q000523:psychology*; D008875:Middle Aged; D011795:Surveys and Questionnaires
Colorectal cancer; Genetic screening; Genetic testing; HNPCC; Lynch syndrome; Microsatellite instability