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

Abstract

PurposeReducing ultraviolet radiation (UVR) 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.MethodsThis study evaluated changes 2 years following melanoma genetic testing in self-reported practice of sun-protection (sunscreen, photoprotective clothing, UVR avoidance) among 37 members of two CDKN2A/p16 kindreds (10 unaffected carriers, 11 affected carriers, 16 unaffected noncarriers; response rate=64.9% of eligible participants).ResultsMultivariate profile analysis indicated that all 3 participant groups reported increased daily routine practice of sun-protection 2 years following melanoma genetic testing (p<.02), with 96.9% reporting that at least 1 sun-protection behavior was part of their daily routine, up from 78.1% at baseline (p<.015). Unaffected carriers (p<.024) and unaffected noncarriers (p<.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<.018).ConclusionMembers 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.

Melanoma genetics

“…The impact of melanoma risk discussion on the effect on future sun safety behaviours has been demonstrated in a group of family members identified for CDKN2A testing 106. Two years following genetic testing, individuals sustained improvements in daily sun protection and fewer sunburns, with no diminution after a negative test result 106.…”

Impact of melanoma genetic test reporting on perceived control over melanoma prevention

“…We have previously described both psychological and behavioral outcomes of melanoma genetic testing in this sample, finding low reported distress overall (Aspinwall et al, 2013a) and sustained improvements in sun-protection behavior among unaffected carriers and noncarriers at the 2-year follow-up (Aspinwall et al., 2014b). To examine the association of changes in perceived control with these outcomes, we conducted exploratory analyses of the relationships between changes in perceived control and changes in sun-protection behavior and psychological distress following test reporting and counseling.…”

“…First, among the 37 participants who provided complete data concerning their frequency of practice of specific photoprotection behaviors at the 2-year follow-up (see Aspinwall et al, 2014b, for details), we used repeated-measures ANOVA to examine changes in sun-protection behavior from baseline to 2 years among participants who reported increased, decreased, or unchanged estimates of perceived control over the course of the study. In the case of protective clothing use only, this analysis yielded a significant Participant Group x Change in Perceived Control x Time interaction ( F (4,28) =2.902, p <.040), such that both unaffected carriers and unaffected noncarriers who reported increases in perceived control reported significant increases in protective clothing use at 2 years.…”

“…All 61 participants elected to receive results, but one withdrew after counseling due to fatigue. After completing a post-counseling 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 (Aspinwall et al, 2008, 2009, 2013a, 2013b; 2014a, 2014b); of these, 51 (89.5% of eligible participants) enrolled. As shown in Figure 1, response rates for follow-up assessments were 82.4% of enrolled participants at 1 month, 72.6% at 6 months, 58.8% at 1 year and 72.6% at 2 years.…”

Recommandations pour le diagnostic de prédisposition génétique au mélanome cutané et pour la prise en charge des personnes à risque

“…Selon une enquête menée en 2002 auprès de dermatologues hospitaliers français, la connaissance du statut « muté » motive les familles pour la prévention solaire et la surveillance. Le bénéfice du test génétique est confirmé par des études menées en Suède [5], en Hollande [6,7] et aux États-Unis, celles-ci ayant de plus montré qu'il n'y avait pas d'impact sur la motivation des patients non-porteurs de mutation [8][9][10]. En Australie [11][12][13] et en Suède [14], les tests génétiques sont plutôt bien acceptés et n'induisent pas de souffrance psychologique notable.…”