Discussion of photoprotection, screening, and risk behaviors with children and grandchildren after melanoma genetic test
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ORIGINAL ARTICLE
Discussion of photoprotection, screening, and risk behaviors with children and grandchildren after melanoma genetic testing Yelena P. Wu 1,2 & Lisa G. Aspinwall 3 & Timothy C. Michaelis 4 & Tammy Stump 3 & Wendy G. Kohlmann 2 & Sancy A. Leachman 5
Received: 21 January 2015 / Accepted: 4 June 2015 # Springer-Verlag Berlin Heidelberg 2015
Abstract The purpose of the current study was to examine changes in frequency of discussion about melanoma preventive behaviors among adults who received melanoma genetic test reporting and counseling and their children and grandchildren, correspondence of frequency of discussion with intentions, and content of discussions. Participants received CDKN2A/p16 testing and counseling (N=24, 46 % p16-positive). Discussions about preventive behaviors were assessed before testing and 1 and 6 months post-testing. Intentions to discuss preventive behaviors and perceived preparedness to discuss risk were assessed post-testing. Openended questions assessed content of reported discussions. Discussion of preventive behaviors declined following test reporting, with more rapid decline reported by noncarriers. There was a large gap between the percentage of participants who intended to discuss preventive behaviors and who then reported discussions 1 and 6 months after counseling. Participants felt prepared to discuss melanoma risk but also
* Yelena P. Wu [email protected] 1
Division of Public Health, Department of Family and Preventive Medicine, University of Utah, 375 Chipeta Way, Suite A, Salt Lake City, UT 84108, USA
2
Huntsman Cancer Institute, 2000 Circle of Hope Drive, Salt Lake City, UT 84112, USA
3
Department of Psychology, University of Utah, 380 South 1530 East, Salt Lake City, UT 84112, USA
4
School of Medicine, University of Utah, 30 North 1900 East, Salt Lake City, UT 84132, USA
5
Department of Dermatology, Oregon Health and Science University, 3303 Southwest Bond Avenue, Portland, OR 97239, USA
suggested resources to facilitate discussions. Genetic test reporting and counseling alone did not sustain discussions about preventive behaviors for a hereditary cancer with children and grandchildren. The gap between intentions to have discussions and reported discussions has implications for augmentation of counseling to support at-risk families’ discussions about preventive behaviors. Keywords Melanoma . CDKN2A/p16 . Genetic testing . Family communication . Prevention
Introduction Of all melanomas, 5 to 10 % are hereditary, and of those, 20 to 40 % are associated with a pathogenic mutation in CDKN2A/ p16 (Florell et al. 2005; Goldstein et al. 2007). Genetic testing and counseling provide an opportunity to inform individuals and their family of their risk for melanoma and to provide education on preventive behaviors to mitigate genetic risk (Leachman et al. 2009). Individuals at elevated risk for melanoma should engage in daily photoprotective practices (e.g., use of sunscreen, physical barriers to block ultraviolet radiation and prevent sunburns), perform scr
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