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%). CONCLUSION: 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.
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%). CONCLUSION: 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: Lisa G Aspinwall; Jennifer M Taber; Samantha L Leaf; Wendy Kohlmann; Sancy A Leachman Journal: Cancer Epidemiol Biomarkers Prev Date: 2013-08-15 Impact factor: 4.254
Authors: Yelena P Wu; Lisa G Aspinwall; Timothy C Michaelis; Tammy Stump; Wendy G Kohlmann; Sancy A Leachman Journal: J Community Genet Date: 2015-06-23
Authors: Xuan Zhu; Emma R Leof; Kari G Rabe; Jennifer B McCormick; Gloria M Petersen; Carmen Radecki Breitkopf Journal: Public Health Genomics Date: 2019-04-18 Impact factor: 2.000
Authors: Lisa G Aspinwall; Jennifer M Taber; Wendy Kohlmann; Samantha L Leaf; Sancy A Leachman Journal: J Genet Couns Date: 2013-12-10 Impact factor: 2.537
Authors: Lisa G Aspinwall; Tammy K Stump; Jennifer M Taber; Danielle M Drummond; Wendy Kohlmann; Marjan Champine; Sancy A Leachman Journal: Transl Behav Med Date: 2018-01-29 Impact factor: 3.046
Authors: Jennifer M Taber; Lisa G Aspinwall; Danielle M Drummond; Tammy K Stump; Wendy Kohlmann; Marjan Champine; Pamela Cassidy; Sancy A Leachman Journal: Ann Behav Med Date: 2021-02-12