title: Psychological implications of living with familial adenomatous polyposis.
abstract: OBJECTIVE
  Psychosocial implications of living with FAP remain largely unexplored. This article reviews available literature on three topics: 1) Implications of living with FAP 2) genetic testing and reproductive decision-making and 3) family communication.
  
  
  METHODS
  Papers published until 2009 about psychosocial and behavioral issues in FAP were identified.
  
  
  RESULTS
  Psychometric data indicate that FAP patients and at-risk relatives as a group do not exhibit clinical symptoms of mental health problems after clinical or genetic diagnosis. However, some subgroups revealed to be more vulnerable to distress. Also, concerns related to the disease and its consequences were reported. While interest in prenatal diagnosis or preimplantation genetic diagnosis seems to be high it is important to study actual uptake because this may reveal to be much lower. Family members are an important source of information and the few available data suggest that family communication is problematic. The findings described have several shortcomings. They were obtained from only a few studies often conducted using specific or mixed study groups, originating from the 90ties and mostly cross-sectional in nature.
  
  
  CONCLUSIONS
  For clinical practice, it is important to have more research data on how FAP patients at different ages cope with the disease, on the impact of genetic testing on reproductive decision-making and on family communication. Results reported here need to be confirmed by additional research and new themes need to be explored.
authors: Belgian Polyposis Project, Familial Adenomatous Polyposis Association (FAPA), Brussels. info@belgianfapa.be
authors: E
authors: E
authors: Claes
authors: M
authors: M
authors: Renson
authors: A
authors: A
authors: Delespesse
authors: V
authors: V
authors: De Hoe
authors: G
authors: G
authors: Haelterman
authors: A
authors: A
authors: Kartheuser
authors: E
authors: E
authors: Van Cutsem
mesh_terms: D000223:Adaptation, Psychological; D011125:Adenomatous Polyposis Coli / Q000523:psychology*; D005192:Family Health; D006801:Humans; D012098:Reproduction