Genetic testing for hereditary melanoma and pancreatic cancer: a longitudinal study of psychological outcome
Article first published online: 7 OCT 2011
Copyright © 2011 John Wiley & Sons, Ltd.
Volume 22, Issue 2, pages 276–289, February 2013
How to Cite
Aspinwall, L. G., Taber, J. M., Leaf, S. L., Kohlmann, W. and Leachman, S. A. (2013), Genetic testing for hereditary melanoma and pancreatic cancer: a longitudinal study of psychological outcome. Psycho-Oncology, 22: 276–289. doi: 10.1002/pon.2080
- Issue published online: 3 FEB 2013
- Article first published online: 7 OCT 2011
- Manuscript Accepted: 27 AUG 2011
- Manuscript Revised: 26 AUG 2011
- Manuscript Received: 4 MAR 2011
- genetic testing;
- pancreatic cancer
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.
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).
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%).
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. Copyright © 2011 John Wiley & Sons, Ltd.