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Unaffected family members report improvements in daily routine sun protection 2 years following melanoma genetic testing.

Aspinwall LG, Taber JM, Kohlmann W, Leaf SL, Leachman SA - Genet. Med. (2014)

Bottom Line: Unaffected carriers (P < 0.024) and unaffected noncarriers (P < 0.027) reported significantly more frequent use of photoprotective clothing.Reported sunburns in the past 6 months decreased significantly (P < 0.018).Thus, genetic testing and counseling may motivate sustained improvements in prevention behaviors.

View Article: PubMed Central - PubMed

Affiliation: Department of Psychology, University of Utah, Salt Lake City, Utah, USA.

ABSTRACT

Purpose: Reducing ultraviolet radiation exposure may decrease melanoma risk in the hereditary melanoma setting. It is unknown whether genetic counseling and test reporting of CDKN2A/p16 mutation status promote long-term compliance with photoprotection recommendations, especially in unaffected mutation carriers.

Methods: This study evaluated changes 2 years following melanoma genetic testing in self-reported practice of sun protection (sunscreen, photoprotective clothing, and ultraviolet radiation avoidance) among 37 members of two CDKN2A/p16 kindreds (10 unaffected carriers, 11 affected carriers, and 16 unaffected noncarriers; response rate = 64.9% of eligible participants).

Results: Multivariate profile analysis indicated that all three participant groups reported increased daily routine practice of sun protection 2 years following melanoma genetic testing (P < 0.02), with 96.9% reporting that at least one sun protection behavior was part of their daily routine, up from 78.1% at baseline (P < 0.015). Unaffected carriers (P < 0.024) and unaffected noncarriers (P < 0.027) reported significantly more frequent use of photoprotective clothing. Affected carriers maintained adherence to all sun protection behaviors. Reported sunburns in the past 6 months decreased significantly (P < 0.018).

Conclusion: Members of high-risk families reported increased daily routine sun protection and decreased sunburns 2 years following melanoma genetic testing, with no net decline in sun protection following negative test results. Thus, genetic testing and counseling may motivate sustained improvements in prevention behaviors.

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Related in: MedlinePlus

Recruitment, retention, and attrition of noncarriers, unaffected carriers, and affected carriers at baseline and 2-year follow-up.a One began study participation after the seasonal cutoff date (an eligibility criterion intended to provide seasonal adjustment for measures of photoprotection). The other two were not invited to the follow-up study because one participant was adopted and the other was from a small kindred. Given the focus on family communication and other familial issues in other parts of the questionnaire, it was decided that these participants' experience with genetic counseling and test reporting would be substantially different from the experiences of other participants.b Retention rates for the 2-year follow-up assessment were calculated out of the 57 eligible participants (26 unaffected noncarriers, 15 unaffected carriers, and 16 affected carriers) who were invited to the follow-up study.
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Figure 1: Recruitment, retention, and attrition of noncarriers, unaffected carriers, and affected carriers at baseline and 2-year follow-up.a One began study participation after the seasonal cutoff date (an eligibility criterion intended to provide seasonal adjustment for measures of photoprotection). The other two were not invited to the follow-up study because one participant was adopted and the other was from a small kindred. Given the focus on family communication and other familial issues in other parts of the questionnaire, it was decided that these participants' experience with genetic counseling and test reporting would be substantially different from the experiences of other participants.b Retention rates for the 2-year follow-up assessment were calculated out of the 57 eligible participants (26 unaffected noncarriers, 15 unaffected carriers, and 16 affected carriers) who were invited to the follow-up study.

Mentions: For the purposes of the present study, every participant in the phenotyping study who was a member of a p16-positive kindred (n=77) was recontacted and invited to participate in the present study (see 25). Recruitment and retention are summarized in Figure 1. Not included in the figure or the retention statistics are 3 of the 77 participants who had a history of melanoma but tested negative for the p16 mutation. These participants completed multiple follow-up assessments but were excluded from analysis because there were too few to permit meaningful comparisons. From May through November 2005, 61 (82.4%) participants completed a written baseline questionnaire immediately prior to a genetic counseling session that included the option to receive individual p16 results, followed by test reporting. All 61 participants elected to receive results during the counseling session. After completing a post-session questionnaire, 57 participants were then invited to enroll in the companion follow-up study of long-term psychological and behavioral responses to p16 test reporting (26, 27). As shown in Figure 1, 51 (89.5% of eligible participants) enrolled. Participants received modest non-monetary incentives (e.g., water bottles and tote bags) for completing follow-up questionnaires. Results of short-term analyses were previously reported (12). As shown in Figure 1, 37 participants (10 unaffected carriers, 11 affected carriers, 16 unaffected noncarriers, 64.9% response rate) completed the 2-year, follow-up assessment; of these, 5 (3 unaffected noncarriers, 2 unaffected carriers) completed an abbreviated phone version.


Unaffected family members report improvements in daily routine sun protection 2 years following melanoma genetic testing.

Aspinwall LG, Taber JM, Kohlmann W, Leaf SL, Leachman SA - Genet. Med. (2014)

Recruitment, retention, and attrition of noncarriers, unaffected carriers, and affected carriers at baseline and 2-year follow-up.a One began study participation after the seasonal cutoff date (an eligibility criterion intended to provide seasonal adjustment for measures of photoprotection). The other two were not invited to the follow-up study because one participant was adopted and the other was from a small kindred. Given the focus on family communication and other familial issues in other parts of the questionnaire, it was decided that these participants' experience with genetic counseling and test reporting would be substantially different from the experiences of other participants.b Retention rates for the 2-year follow-up assessment were calculated out of the 57 eligible participants (26 unaffected noncarriers, 15 unaffected carriers, and 16 affected carriers) who were invited to the follow-up study.
© Copyright Policy
Related In: Results  -  Collection

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getmorefigures.php?uid=PMC4209010&req=5

Figure 1: Recruitment, retention, and attrition of noncarriers, unaffected carriers, and affected carriers at baseline and 2-year follow-up.a One began study participation after the seasonal cutoff date (an eligibility criterion intended to provide seasonal adjustment for measures of photoprotection). The other two were not invited to the follow-up study because one participant was adopted and the other was from a small kindred. Given the focus on family communication and other familial issues in other parts of the questionnaire, it was decided that these participants' experience with genetic counseling and test reporting would be substantially different from the experiences of other participants.b Retention rates for the 2-year follow-up assessment were calculated out of the 57 eligible participants (26 unaffected noncarriers, 15 unaffected carriers, and 16 affected carriers) who were invited to the follow-up study.
Mentions: For the purposes of the present study, every participant in the phenotyping study who was a member of a p16-positive kindred (n=77) was recontacted and invited to participate in the present study (see 25). Recruitment and retention are summarized in Figure 1. Not included in the figure or the retention statistics are 3 of the 77 participants who had a history of melanoma but tested negative for the p16 mutation. These participants completed multiple follow-up assessments but were excluded from analysis because there were too few to permit meaningful comparisons. From May through November 2005, 61 (82.4%) participants completed a written baseline questionnaire immediately prior to a genetic counseling session that included the option to receive individual p16 results, followed by test reporting. All 61 participants elected to receive results during the counseling session. After completing a post-session questionnaire, 57 participants were then invited to enroll in the companion follow-up study of long-term psychological and behavioral responses to p16 test reporting (26, 27). As shown in Figure 1, 51 (89.5% of eligible participants) enrolled. Participants received modest non-monetary incentives (e.g., water bottles and tote bags) for completing follow-up questionnaires. Results of short-term analyses were previously reported (12). As shown in Figure 1, 37 participants (10 unaffected carriers, 11 affected carriers, 16 unaffected noncarriers, 64.9% response rate) completed the 2-year, follow-up assessment; of these, 5 (3 unaffected noncarriers, 2 unaffected carriers) completed an abbreviated phone version.

Bottom Line: Unaffected carriers (P < 0.024) and unaffected noncarriers (P < 0.027) reported significantly more frequent use of photoprotective clothing.Reported sunburns in the past 6 months decreased significantly (P < 0.018).Thus, genetic testing and counseling may motivate sustained improvements in prevention behaviors.

View Article: PubMed Central - PubMed

Affiliation: Department of Psychology, University of Utah, Salt Lake City, Utah, USA.

ABSTRACT

Purpose: Reducing ultraviolet radiation exposure may decrease melanoma risk in the hereditary melanoma setting. It is unknown whether genetic counseling and test reporting of CDKN2A/p16 mutation status promote long-term compliance with photoprotection recommendations, especially in unaffected mutation carriers.

Methods: This study evaluated changes 2 years following melanoma genetic testing in self-reported practice of sun protection (sunscreen, photoprotective clothing, and ultraviolet radiation avoidance) among 37 members of two CDKN2A/p16 kindreds (10 unaffected carriers, 11 affected carriers, and 16 unaffected noncarriers; response rate = 64.9% of eligible participants).

Results: Multivariate profile analysis indicated that all three participant groups reported increased daily routine practice of sun protection 2 years following melanoma genetic testing (P < 0.02), with 96.9% reporting that at least one sun protection behavior was part of their daily routine, up from 78.1% at baseline (P < 0.015). Unaffected carriers (P < 0.024) and unaffected noncarriers (P < 0.027) reported significantly more frequent use of photoprotective clothing. Affected carriers maintained adherence to all sun protection behaviors. Reported sunburns in the past 6 months decreased significantly (P < 0.018).

Conclusion: Members of high-risk families reported increased daily routine sun protection and decreased sunburns 2 years following melanoma genetic testing, with no net decline in sun protection following negative test results. Thus, genetic testing and counseling may motivate sustained improvements in prevention behaviors.

Show MeSH
Related in: MedlinePlus