title: Individuals with an increased risk of colorectal cancer: perceived benefits and psychological aspects of surveillance by means of regular colonoscopies.
abstract: OBJECTIVE
  To evaluate the psychological consequences of genetic counseling followed by a surveillance program using colonoscopy among individuals with increased risk of colorectal cancer.
  
  
  METHODS
  Two hundred sixty-five individuals, participating in a surveillance program with colonoscopy, were mailed a survey questionnaire that assessed their experience of the surveillance program and their perception of the risk of colorectal cancer. The Hospital Anxiety and Depression scale and the Swedish Short Form-36 Health Survey was also included.
  
  
  RESULTS
  Two hundred forty individuals completed the questionnaire and were divided into the following risk groups: risk group 1, an individual with a mutation in hMLH1 or hMSH2 and a lifetime colorectal cancer risk of 80% (n = 28); risk group 2, a lifetime colorectal cancer risk of 40% (n = 129); and risk group 3, a lifetime colorectal cancer risk of 20% (n = 83). Among all individuals, the mean for perceived benefit was 8.0, and the perception of discomfort was 3.3 on the visual analog scale (1-10). In risk group 1, 61% underestimated personal risks as being 40% or less. Approximately 50% of the subjects in risk groups 2 and 3 either under- or overestimated their lifetime risk. According to the Swedish Short Form-36 Health Survey and the Hospital Anxiety and Depression scale, the study sample resembled the reference population.
  
  
  CONCLUSIONS
  A majority of the study sample understood why they were under surveillance, and regular colonoscopies were well-tolerated. The wide range of risk perception as well as low-risk perception in mutation positive subjects is acceptable, as long as these individuals adhere to surveillance programs and do not demonstrate increased levels of anxiety or depression.
authors.affiliation: Department of Clinical Oncology, Karolinska University Hospital, Karolinska Institute, Stockholm, Sweden. annelie.liljegren@telia.com
authors.forename: A
authors.initials: A
authors.lastname: Liljegren
authors.forename: G
authors.initials: G
authors.lastname: Lindgren
authors.forename: Y
authors.initials: Y
authors.lastname: Brandberg
authors.forename: S
authors.initials: S
authors.lastname: Rotstein
authors.forename: B
authors.initials: B
authors.lastname: Nilsson
authors.forename: T
authors.initials: T
authors.lastname: Hatschek
authors.forename: E
authors.initials: E
authors.lastname: Jaramillo
authors.forename: A
authors.initials: A
authors.lastname: Lindblom
mesh_terms: D048868:Adaptor Proteins, Signal Transducing; D000328:Adult; D001007:Anxiety; D002352:Carrier Proteins; D003113:Colonoscopy / Q000009:adverse effects / Q000706:statistics & numerical data*; D015179:Colorectal Neoplasms / Q000175:diagnosis* / Q000235:genetics*; D003430:Cross-Sectional Studies; D004252:DNA Mutational Analysis; D004268:DNA-Binding Proteins / Q000235:genetics; D003863:Depression; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D006801:Humans; D008297:Male; D008875:Middle Aged; D000070957:MutL Protein Homolog 1; D051718:MutS Homolog 2 Protein; D009363:Neoplasm Proteins / Q000235:genetics; D009687:Nuclear Proteins; D010358:Patient Participation; D010465:Perception; D011159:Population Surveillance; D011518:Proto-Oncogene Proteins / Q000235:genetics; D012307:Risk Factors
chemical_list: D048868:Adaptor Proteins, Signal Transducing; D002352:Carrier Proteins; D004268:DNA-Binding Proteins; C501486:MLH1 protein, human; D009363:Neoplasm Proteins; D009687:Nuclear Proteins; D011518:Proto-Oncogene Proteins; C497172:MSH2 protein, human; D000070957:MutL Protein Homolog 1; D051718:MutS Homolog 2 Protein