title: Knowledge and Uptake of Genetic Counseling and Colonoscopic Screening Among Individuals at Increased Risk for Lynch Syndrome and their Endoscopists from the Family Health Promotion Project.
abstract: OBJECTIVE
  Individuals whose families meet the Amsterdam II clinical criteria for hereditary non-polyposis colorectal cancer are recommended to be referred for genetic counseling and to have colonoscopic screening every 1-2 years. To assess the uptake and knowledge of guideline-based genetic counseling and colonoscopic screening in unaffected members of families who meet Amsterdam II criteria and their treating endoscopists.
  
  
  METHODS
  Participants in the Family Health Promotion Project who met the Amsterdam II criteria were surveyed regarding their knowledge of risk-appropriate guidelines for genetic counseling and colonoscopy screening. Endoscopy/pathology reports were obtained from patients screened during the study to determine the follow-up recommendations made by their endoscopists. Survey responses were compared using Fisher's Exact and the χ(2) test. Concordance in participant/provider-reported surveillance interval was assessed using the kappa statistic.
  
  
  RESULTS
  Of the 165 participants, the majority (98%) agreed that genetics and family history are important predictors of CRC, and 63% had heard of genetic testing for CRC, although only 31% reported being advised to undergo genetic counseling by their doctor, and only 7% had undergone genetic testing. Only 26% of participants reported that they thought they should have colonoscopy every 1-2 years and 30% of endoscopists for these participants recommended 1-2-year follow-up colonoscopy. There was a 65% concordance (weighted kappa 0.42, 95% CI 0.24-0.61) between endoscopist recommendations and participant reports regarding screening intervals.
  
  
  CONCLUSIONS
  A minority of individuals meeting Amsterdam II criteria in this series have had genetic testing and reported accurate knowledge of risk-appropriate screening, and only a small percentage of their endoscopists provided them with the appropriate screening recommendations. There was moderate concordance between endoscopist recommendations and participant knowledge suggesting that future educational interventions need to target both health-care providers and their patients.
authors: Department of Medicine, Division of Gastroenterology & Hepatology, University of Colorado Anschutz Medical Center, Aurora, Colorado, USA.|Veterans Administration Medical Center, Denver, Colorado, USA.
authors: Swati G
authors: SG
authors: Patel
authors: Department of Medicine, Division of Gastroenterology & Hepatology, University of Colorado Anschutz Medical Center, Aurora, Colorado, USA.|Gastroenterology of the Rockies, Boulder, Colorado, USA.
authors: Dennis J
authors: DJ
authors: Ahnen
authors: Department of Internal Medicine, University of New Mexico, Albequerque, New Mexico, USA.
authors: Anita Y
authors: AY
authors: Kinney
authors: Massachusetts General Hospital Biostatistics Center, Boston, Massachusetts, USA.
authors: Nora
authors: N
authors: Horick
authors: Massachusetts General Hospital Biostatistics Center, Boston, Massachusetts, USA.|Harvard University, Boston, Massachusetts, USA.
authors: Dianne M
authors: DM
authors: Finkelstein
authors: Department of Internal Medicine, Division of Epidemiology, University of New Mexico, Albuquerque, New Mexico, USA.
authors: Deirdre A
authors: DA
authors: Hill
authors: Department of Health Science Research, Mayo Clinic, Arizona, USA.
authors: Noralane M
authors: NM
authors: Lindor
authors: Department of Colorectal Medicine and Genetics, The Royal Melbourne Hospital Department of Medicine, University of Melbourne, Victoria, Australia.
authors: Finlay
authors: F
authors: MaCrae
authors: University of Colorado School of Public Health, Aurora, Colorado, USA.
authors: Jan T
authors: JT
authors: Lowery
mesh_terms: D000328:Adult; D000368:Aged; D002983:Clinical Competence; D003113:Colonoscopy / Q000523:psychology / Q000706:statistics & numerical data*; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000175:diagnosis* / Q000235:genetics / Q000523:psychology; D055088:Early Detection of Cancer / Q000523:psychology / Q000706:statistics & numerical data*; D005260:Female; D005762:Gastroenterology / Q000379:methods*; D005817:Genetic Counseling / Q000523:psychology / Q000706:statistics & numerical data*; D005820:Genetic Testing / Q000706:statistics & numerical data*; D007722:Health Knowledge, Attitudes, Practice; D006293:Health Promotion; D006801:Humans; D008297:Male; D008875:Middle Aged; D012306:Risk