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01-06-2014 | Original Research

Perceived Risk Following Melanoma Genetic Testing: A 2-Year Prospective Study Distinguishing Subjective Estimates from Recall

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

Published in: Journal of Genetic Counseling | Issue 3/2014

Abstract

A major goal of predictive genetic testing is to alert people to their risk before illness onset; however, little is known about how risk perceptions change following genetic testing and whether information is recalled accurately over time. In the United States, a CDKN2A/p16 mutation confers 76 % lifetime risk of melanoma. Following genetic counseling and test reporting, subjective risk estimates and recall of counselor-provided risk estimates were assessed 5 times over the next 2 years among 60 adult members of 2 extended CDKN2A/p16 kindreds. No sustained changes from baseline in risk perceptions were reported. Unaffected carriers (n = 15) consistently reported significantly lower subjective risk estimates (46 %) than they were actually given (76 %, p < 0.001) or recalled having been given (60 %, p < 0.001). Noncarriers’ (n = 27) risk estimates decreased following results disclosure, but rebounded, with both subjective and recalled estimates subsequently exceeding what they were told by the counselor (both ps < 0.001). Affected carriers’ (n = 18) risk estimates for developing a new melanoma corresponded well to counselor-provided information (p = 0.362). For all 3 patient groups, results were consistent across multiple risk measures and remained similar when demographic, phenotypic, and baseline behavioral contributors to melanoma risk were statistically controlled. These findings are consistent with other studies of risk perception, but additional studies of more diverse populations are needed to understand the reasons behind both the persistence of initial risk estimates and their divergence from information provided by the counselor during genetic counseling. Additionally, determining whether holding subjective risk perceptions that differ from counselor-provided information ultimately affects adherence to management recommendations will help guide the presentation of risk information in genetic counseling practice.

Because the absolute likelihood measure was highly correlated with the other 2 risk assessments and yielded highly similar results, complete results have been omitted from the manuscript but may be obtained by writing to the authors.

The ANCOVA also controlled for the interaction of each covariate with Time of Assessment. For lifetime percent risk, this yielded an interaction of Eye Color X Time, which indicated that darker eye color predicted marginally lower risk at baseline (p < 0.096) but not at any subsequent assessment.

For comparative risk, the main effect of Group remained significant, F(2,46) = 18.53, p < 0.001, but the main effect of Time was no longer significant, F(5,42) = 1.44, p = 0.232. Furthermore, the Group x Time interaction was marginally significant, F(10,84) = 1.74, p = 0.085. The relative ordering of the three groups was similar to that shown in Figure 3, such that affected carriers rated themselves as having the greatest risk (adjusted M = 4.74), followed by unaffected carriers (adjusted M = 3.76), and noncarriers (adjusted M = 3.35). Additionally, there were significant covariate by time interactions for age, eye color, and moles. For age and eye color, there were no significant predictive relationships for either covariate at any assessment; however, the direction of the coefficients depended on time of assessment. Specifically, greater age predicted lower risk at baseline but not subsequent assessments, while darker eye color predicted lower risk at baseline, but greater risk at 6 months and 1 year. The presence of moles showed a strong and significant relationship to increased risk perceptions at baseline and post-counseling, and marginally significant relationships at 1 month and 1 year, but no relationship to risk perceptions at 2 years.

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Title: Perceived Risk Following Melanoma Genetic Testing: A 2-Year Prospective Study Distinguishing Subjective Estimates from Recall
Authors: Lisa G. Aspinwall
Jennifer M. Taber
Wendy Kohlmann
Samantha L. Leaf
Sancy A. Leachman
Publication date: 01-06-2014
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 3/2014
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-013-9676-1

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Perceived Risk Following Melanoma Genetic Testing: A 2-Year Prospective Study Distinguishing Subjective Estimates from Recall

Abstract

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