Genetic testing for hereditary melanoma and pancreatic cancer

A longitudinal study of psychological outcome

Lisa G. Aspinwall, Jennifer M. Taber, Samantha L. Leaf, Wendy Kohlmann, Sancy Leachman

Research output: Contribution to journalArticle

22 Citations (Scopus)

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%). 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.

Original languageEnglish (US)
Pages (from-to)276-289
Number of pages14
JournalPsycho-Oncology
Volume22
Issue number2
DOIs
StatePublished - Feb 2013
Externally publishedYes

Fingerprint

Genetic Testing
Pancreatic Neoplasms
Longitudinal Studies
Melanoma
Psychology
Anxiety
Depression
Cost-Benefit Analysis
Genetic Counseling
Uncertainty
Counseling
Neoplasms
Emotions
Mutation
Research

Keywords

  • anxiety
  • cancer
  • genetic testing
  • melanoma
  • oncology
  • pancreatic cancer

ASJC Scopus subject areas

  • Oncology
  • Psychiatry and Mental health
  • Experimental and Cognitive Psychology

Cite this

Genetic testing for hereditary melanoma and pancreatic cancer : A longitudinal study of psychological outcome. / Aspinwall, Lisa G.; Taber, Jennifer M.; Leaf, Samantha L.; Kohlmann, Wendy; Leachman, Sancy.

In: Psycho-Oncology, Vol. 22, No. 2, 02.2013, p. 276-289.

Research output: Contribution to journalArticle

Aspinwall, Lisa G. ; Taber, Jennifer M. ; Leaf, Samantha L. ; Kohlmann, Wendy ; Leachman, Sancy. / Genetic testing for hereditary melanoma and pancreatic cancer : A longitudinal study of psychological outcome. In: Psycho-Oncology. 2013 ; Vol. 22, No. 2. pp. 276-289.
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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{\%}). 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.",
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AB - 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.

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