title: Colorectal cancer in the family: psychosocial distress and social issues in the years following genetic counselling.
abstract: BACKGROUND
  This study examined: (1) levels of cancer-specific distress more than one year after genetic counselling for hereditary nonpolyposis colorectal cancer (HNPCC); (2) associations between sociodemographic, clinical and psychosocial factors and levels of distress; (3) the impact of genetic counselling on family relationships, and (4) social consequences of genetic counselling.
  
  
  METHODS
  In this cross-sectional study, individuals who had received genetic counselling for HNPCC during 1986-1998 completed a self-report questionnaire by mail.
  
  
  RESULTS
  116 individuals (81% response rate) completed the questionnaire, on average 4 years after the last counselling session. Of all respondents, 6% had clinically significant levels of cancer-specific distress (Impact of Event Scale, IES). Having had contact with a professional psychosocial worker for cancer risk in the past 10 years was significantly associated with higher levels of current cancer specific distress. Only a minority of the counselees reported any adverse effects of genetic counselling on: communication about genetic counselling with their children (9%), family relationships (5%), obtaining life insurance (8%), choice or change of jobs (2%), and obtaining a mortgage (2%).
  
  
  CONCLUSIONS
  On average, four years after genetic counselling for HNPCC, only a small minority of counselled individuals reports clinically significant levels of distress, or significant family or social problems.
authors.affiliation: Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam. e.bleiker@nki.nl
authors.forename: Eveline M A
authors.initials: EM
authors.lastname: Bleiker
authors.forename: Fred H
authors.initials: FH
authors.lastname: Menko
authors.forename: Irma
authors.initials: I
authors.lastname: Kluijt
authors.forename: Babs G
authors.initials: BG
authors.lastname: Taal
authors.forename: Miranda A
authors.initials: MA
authors.lastname: Gerritsma
authors.forename: Lidwina D V
authors.initials: LD
authors.lastname: Wever
authors.forename: Neil K
authors.initials: NK
authors.lastname: Aaronson