title: Universal tumor screening for Lynch syndrome: Assessment of the perspectives of patients with colorectal cancer regarding benefits and barriers.
abstract: BACKGROUND
  Universal tumor screening for Lynch syndrome, the most common form of hereditary colorectal cancer (CRC), has been recommended among all patients newly diagnosed with CRC. However, there is limited literature regarding patient perspectives of tumor screening for Lynch syndrome among patients with CRC who are not selected for screening based on family history criteria.
  
  
  METHODS
  A total of 145 patients aged 39 to 87 years were administered surveys assessing perceived risk, patient perspectives, and potential benefits of and barriers to tumor screening for Lynch syndrome. Associations between patient-specific and cancer-specific factors and survey responses were analyzed.
  
  
  RESULTS
  The majority of participants perceived their risk of developing Lynch syndrome as being low, with 9 participants (6.2%) anticipating an abnormal screening result. However, most participants endorsed the potential benefits of screening for themselves and their families, with 84.8% endorsing ≥6 benefits and 50.3% endorsing all 8 benefits. Participants also endorsed few potential barriers to screening, with 89.4% endorsing ≤4 of 9 potential barriers. A common barrier was worry about the cost of additional testing and surveillance, which was endorsed by 54.5% of participants. The level of distress associated with tumor screening for Lynch syndrome, which was very low, was not associated with age or CRC stage.
  
  
  CONCLUSIONS
  The results of the current study indicate that patients with CRC overall have a positive attitude toward tumor screening for Lynch syndrome, endorse the benefits of screening, and experience low levels of distress. These findings provide insight into patient attitudes toward tumor screening for Lynch syndrome among unselected patients with CRC to inform educational approaches that assist in patient decision-making and guide the successful implementation of screening programs.
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon.
authors.forename: Jessica Ezzell
authors.initials: JE
authors.lastname: Hunter
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon.
authors.forename: Jamilyn M
authors.initials: JM
authors.lastname: Zepp
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon.
authors.forename: Mari J
authors.initials: MJ
authors.lastname: Gilmore
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon.
authors.forename: James V
authors.initials: JV
authors.lastname: Davis
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon.
authors.forename: Elizabeth J
authors.initials: EJ
authors.lastname: Esterberg
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon.
authors.forename: Kristin R
authors.initials: KR
authors.lastname: Muessig
authors.affiliation: Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, Houston, Texas.
authors.forename: Susan K
authors.initials: SK
authors.lastname: Peterson
authors.affiliation: Division of Medical Oncology, Department of Medicine, Dana-Farber Cancer Institute, Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts.
authors.forename: Sapna
authors.initials: S
authors.lastname: Syngal
authors.affiliation: Department of Family Medicine and Community Health, Department of Reproductive Biology, Case Western Reserve University and University Hospitals Case Medical Center, Cleveland, Ohio.
authors.forename: Louise S
authors.initials: LS
authors.lastname: Acheson
authors.affiliation: Vanderbilt Hereditary Cancer Program, Department of Medicine, Vanderbilt-Ingram Cancer Center, Vanderbilt University, Nashville, Tennessee.
authors.forename: Georgia L
authors.initials: GL
authors.lastname: Wiesner
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon.
authors.forename: Jacob A
authors.initials: JA
authors.lastname: Reiss
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon.
authors.forename: Katrina A B
authors.initials: KA
authors.lastname: Goddard
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000175:diagnosis* / Q000523:psychology*; D055088:Early Detection of Cancer / Q000523:psychology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008403:Mass Screening / Q000523:psychology*; D008875:Middle Aged; D011795:Surveys and Questionnaires
keywords: Lynch syndrome; colorectal neoplasms; genetic counseling; genetic screening; hereditary nonpolyposis colorectal cancer (HNPCC)