title: How does genetic risk information for Lynch syndrome translate to risk management behaviours?
abstract: BACKGROUND
  There is limited research on why some individuals who have undergone predictive genetic testing for Lynch syndrome do not adhere to screening recommendations. This study aimed to explore qualitatively how Lynch syndrome non-carriers and carriers translate genetic risk information and advice to decisions about risk managment behaviours in the Australian healthcare system.
  
  
  METHODS
  Participants of the Australasian Colorectal Cancer Family Registry who had undergone predictive genetic testing for Lynch syndrome were interviewed on their risk management behaviours. Transcripts were analysed thematically using a comparative coding analysis.
  
  
  RESULTS
  Thirty-three people were interviewed. Of the non-carriers (n= 16), 2 reported having apparently unnecessary colonoscopies, and 6 were unsure about what population-based colorectal cancer screening entails. Of the carriers (n= 17), 2 reported they had not had regular colonoscopies, and spoke about their discomfort with the screening process and a lack of faith in the procedure's ability to reduce their risk of developing colorectal cancer. Of the female carriers (n= 9), 2 could not recall being informed about the associated risk of gynaecological cancers.
  
  
  CONCLUSIONS
  Non-carriers and female carriers of Lynch syndrome could benefit from further clarity and advice about appropriate risk management options. For those carriers who did not adhere to colonoscopy screening, a lack of faith in both genetic test results and screening were evident. It is essential that consistent advice is offered to both carriers and non-carriers of Lynch syndrome.
authors.affiliation: Centre for Health Equity, The University of Melbourne, Melbourne, Australia.
authors.forename: Emma
authors.identifier: 0000-0001-7466-4326
authors.initials: E
authors.lastname: Steel
authors.affiliation: Centre for Health Equity, The University of Melbourne, Melbourne, Australia.
authors.forename: Andrew
authors.initials: A
authors.lastname: Robbins
authors.affiliation: Centre for Epidemiology and Biostatistics, The University of Melbourne, Melbourne, Australia.
authors.forename: Mark
authors.initials: M
authors.lastname: Jenkins
authors.affiliation: Centre for Epidemiology and Biostatistics, The University of Melbourne, Melbourne, Australia.
authors.forename: Louisa
authors.initials: L
authors.lastname: Flander
authors.affiliation: Walter and Eliza Hall Institute, Melbourne, Australia.
authors.forename: Clara
authors.initials: C
authors.lastname: Gaff
authors.affiliation: Centre for Health Equity, The University of Melbourne, Melbourne, Australia.
authors.forename: Louise
authors.initials: L
authors.lastname: Keogh
keywords: Lynch syndrome; Patient-clinician communication; Predictive genetic testing; Screening colonoscopy