title: Genetic testing for hereditary melanoma and pancreatic cancer: a longitudinal study of psychological outcome.
abstract: OBJECTIVE
  CDKN2A/p16 mutations confer 76% lifetime risk of melanoma and up to 17% lifetime risk of pancreatic cancer. Our objective was to determine the short- and long-term impact of CDKN2A/p16 genetic counseling and test reporting on psychological distress, cancer worry, and perceived costs and benefits of testing.
  
  
  METHODS
  Prospective changes in anxiety, depression, and cancer worry following CDKN2A/p16 counseling and test reporting were evaluated at multiple assessments over 2 years among 60 adult members of melanoma-prone families; 37 participants completed the 2-year follow-up. Quantitative and qualitative assessments of the costs and benefits of testing were carried out. Outcomes were evaluated among unaffected noncarriers (n = 27), unaffected carriers (n = 15), and affected carriers (n = 18).
  
  
  RESULTS
  Reported anxiety and depression were low. For carriers and noncarriers, anxiety decreased significantly throughout the 2-year period, whereas depression and melanoma worry showed short-term decreases. Worry about pancreatic cancer was low and decreased significantly. In all groups, test-related distress and uncertainty were low, regret was absent, and positive experiences were high. All participants (>93% at each assessment) reported at least one perceived benefit of genetic testing; only 15.9% listed any negative aspect. Carriers reported increased knowledge about melanoma risk and prevention (78.3%) and increased prevention and screening behaviors for self and family (65.2%). Noncarriers reported increased knowledge (95.2%) and emotional benefits (71.4%).
  
  
  CONCLUSIONS
  Among US participants familiar with their hereditary melanoma risk through prior epidemiological research participation, CDKN2A/p16 genetic testing provides multiple perceived benefits to both carriers and noncarriers without inducing distress in general or worry about melanoma or pancreatic cancer.
authors: Department of Psychology, University of Utah, Salt Lake City, UT, USA. lisa.aspinwall@utah.edu
authors: Lisa G
authors: LG
authors: Aspinwall
authors: Jennifer M
authors: JM
authors: Taber
authors: Samantha L
authors: SL
authors: Leaf
authors: Wendy
authors: W
authors: Kohlmann
authors: Sancy A
authors: SA
authors: Leachman
mesh_terms: D000328:Adult; D001007:Anxiety / Q000523:psychology*; D003863:Depression / Q000523:psychology*; D005260:Female; D019942:Genes, p16; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease / Q000523:psychology; D005820:Genetic Testing; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008545:Melanoma / Q000235:genetics / Q000523:psychology*; D008875:Middle Aged; D010190:Pancreatic Neoplasms / Q000235:genetics / Q000523:psychology*; D011446:Prospective Studies; D014481:United States