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. 2013 Oct;22(10):1687-97.
doi: 10.1158/1055-9965.EPI-13-0422. Epub 2013 Aug 15.

Melanoma genetic counseling and test reporting improve screening adherence among unaffected carriers 2 years later

Lisa G Aspinwall  1 , Jennifer M Taber, Samantha L Leaf, Wendy Kohlmann, Sancy A Leachman
Affiliations

Melanoma genetic counseling and test reporting improve screening adherence among unaffected carriers 2 years later

Lisa G Aspinwall et al. Cancer Epidemiol Biomarkers Prev. 2013 Oct.

Abstract

Background: A major goal of predictive genetic testing for melanoma is to promote early detection to reduce mortality. This study evaluated the long-term impact of melanoma genetic test reporting and counseling on screening adherence.

Methods: This study assessed adherence to recommendations for annual total body skin examinations (TBSE) and monthly skin self-examinations (SSE) among 37 members of Utah CDKN2A/p16 kindreds (10 unaffected carriers, 11 affected carriers, and 16 unaffected noncarriers; response rate = 64.9% of eligible participants).

Results: Two years following test reporting, adherence to annual TBSE among unaffected carriers increased from 40% to 70%. However, unaffected noncarriers' adherence decreased from 56% to 13%. Affected carriers reported TBSEs at both assessments (91% and 82%, respectively). Monthly SSE frequency remained highly variable in all patient groups: at 2 years, 29.7% reported monthly SSEs, 27.0% reported more frequent self-examinations, and 43.2% reported underscreening. However, SSE quality improved significantly: participants checked more body sites at 2 years than at baseline, especially feet, shoulders, legs, and genitals. Perceived logistic barriers to TBSEs (e.g., expensive, inconvenient) and SSEs (hard to remember, time-consuming) predicted lower adherence.

Conclusions: Unaffected carriers reported increased TBSE adherence and thoroughness of SSEs 2 years following melanoma genetic test reporting, suggesting clinical benefit in this modest sample. Unaffected noncarriers reported comparable gains in SSE thoroughness, but decreased TBSEs.

Impact: Melanoma genetic counseling and test reporting may improve adherence among unaffected carrier members of p16 families. Further interventions to reduce logistic barriers and to promote continued screening adherence among unaffected noncarrier family members may be needed.

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Conflict of interest statement

There are no conflicts of interest

Figures

Figure 1
Figure 1
Recruitment, retention, and attrition of unaffected noncarriers, unaffected carriers, and affected carriers at each assessment, along with reasons for participant nonresponse to initial invitation to participate in follow-up study.
Figure 2
Figure 2
Percentage of unaffected carriers, affected carriers, and unaffected noncarriers reporting a TBSE in past year at baseline and 2 years following p16 genetic counseling and test reporting.
Figure 3
Figure 3
Percentage of unaffected noncarriers, unaffected carriers, and affected carriers in each monthly SSE adherence category from extreme underscreening (red) to extreme overscreening (blue) at baseline and 2 years.
Figure 4
Figure 4
Number of body sites examined during SSE at baseline and 2 years following genetic test reporting in the 3 patient groups.
Figure 5
Figure 5
Perceived barriers to TBSE and SSE performance in the 3 patient groups at baseline and 1 year following genetic counseling and test reporting.
See this image and copyright information in PMC

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