Cancer genetic testing alerts mutation carrier members to their elevated risk before disease onset, when early detection and even prevention may be possible. Little is known about the effect of genetic test reporting on prevention behaviors, as prior studies have focused on screening. Familial melanoma presents an ideal context in which to examine the impact of genetic test reporting on prevention behaviors because avoidance of UVR, a well-established risk factor in this population, represents a quantifiable prevention measure. We hypothesize that melanoma genetic test reporting will improve patient compliance with prevention and screening recommendations above that observed with counseling alone, and that specific cognitive and individual difference characteristics will be associated with compliance and non-compliance in the familial melanoma population. More broadly, our research strategy permits elucidation of cognitive processes that determine a patient's response to genetic test reporting. Thus, it may ultimately be possible to tailor genetic test results to maximize compliance with prevention recommendations. To accomplish these goals, four specific aims will be prospectively evaluated in 300 members of high-risk melanoma families.
In Aim 1 we will measure UVR exposure in unaffected mutation carriers, compared to counseling-only matched controls, using a wristwatch-type UVR dosimeter and reflectance spectroscopy device. This will allow us to disentangle the effects of counseling from those of genetic test reporting in the reduction of UVR exposure, our primary prevention outcome.
Aim 2 will similarly determine if counseling and/or reporting improve the frequency and thoroughness of skin self-examinations (SSEs) and professional total body skin examination (TBSEs).
Aim 3 will identify specific cognitive and emotional consequences of receiving a definitive positive genetic test result compared to counseling-only controls, and whether such changes mediate modification in prevention behaviors.
Aim 4 will identify patient subgroups at risk for poor adherence and psychological distress following reporting. Taken together, these Aims will allow determination of whether genetic test reporting improves prevention and screening adherence and if so, why and for whom.

Public Health Relevance

The goal of predictive genetic testing for cancer is to alert carrier members of high-risk families to their elevated risk prior to the onset of disease, when early detection and even prevention may be possible. For such benefits to occur people who carry a genetic predisposition to cancer must understand their elevated risk and believe that prevention and screening efforts will be effective in managing their risk. The proposed study examines how a positive genetic test result influences high-risk participants'understanding and management of their melanoma risk over a two-year period, compared to participants who receive standard counseling based on family history alone.

Agency
National Institute of Health (NIH)
Institute
National Cancer Institute (NCI)
Type
Research Project (R01)
Project #
5R01CA158322-02
Application #
8255449
Study Section
Psychosocial Risk and Disease Prevention Study Section (PRDP)
Program Officer
Nelson, Wendy
Project Start
2011-04-08
Project End
2016-03-31
Budget Start
2012-04-30
Budget End
2013-03-31
Support Year
2
Fiscal Year
2012
Total Cost
$601,560
Indirect Cost
$199,179
Name
University of Utah
Department
Dermatology
Type
Schools of Medicine
DUNS #
009095365
City
Salt Lake City
State
UT
Country
United States
Zip Code
84112
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Wu, Yelena P; Nagelhout, Elizabeth; Aspinwall, Lisa G et al. (2018) A novel educational intervention targeting melanoma risk and prevention knowledge among children with a familial risk for melanoma. Patient Educ Couns 101:452-459
Wu, Yelena P; Aspinwall, Lisa G; Nagelhout, Elizabeth et al. (2018) Development of an Educational Program Integrating Concepts of Genetic Risk and Preventive Strategies for Children with a Family History of Melanoma. J Cancer Educ 33:774-781
Stump, Tammy K; Aspinwall, Lisa G; Kohlmann, Wendy et al. (2018) Genetic Test Reporting and Counseling for Melanoma Risk in Minors May Improve Sun Protection Without Inducing Distress. J Genet Couns 27:955-967
Wu, Yelena P; Parsons, Bridget G; Mooney, Ryan et al. (2018) Barriers and Facilitators to Melanoma Prevention and Control Behaviors Among At-Risk Children. J Community Health 43:993-1001
Aspinwall, Lisa G; Stump, Tammy K; Taber, Jennifer M et al. (2018) Genetic test reporting of CDKN2A provides informational and motivational benefits for managing melanoma risk. Transl Behav Med 8:29-43
Wu, Yelena P; Aspinwall, Lisa G; Conn, Bridgid M et al. (2016) A systematic review of interventions to improve adherence to melanoma preventive behaviors for individuals at elevated risk. Prev Med 88:153-67
Wu, Yelena P; Aspinwall, Lisa G; Michaelis, Timothy C et al. (2016) Discussion of photoprotection, screening, and risk behaviors with children and grandchildren after melanoma genetic testing. J Community Genet 7:21-31
Aspinwall, Lisa G; Stump, Tammy K; Taber, Jennifer M et al. (2015) Impact of melanoma genetic test reporting on perceived control over melanoma prevention. J Behav Med 38:754-65

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