A few small studies have examined distress and behavioral factors associated with CDKN2A testing for melanoma. In a Swedish clinic for individuals at high risk for melanoma resulting from dysplastic nevus syndrome, 11 unaffected, untested individuals drawn from families in which a CDKN2A mutation has been identified were examined. Most (9 of 11) reported no worry about increased melanoma risk. In assessments after disclosure of results, there were no increasing trends towards depression, anxiety, or increased melanoma-risk perception by test results, and no systematic change in sun-related habits by test results.
Another study examined behavioral factors associated with CDKN2A carrier status among 64 individuals from two large Utah families in which a CDKN2A mutation had been identified. The individuals received extensive recommendations for sun protection and screening. Questionnaires conducted one month after receipt of genetic test results and recommendations showed increased intention for skin examinations (self-examinations and health care professional examinations), regardless of whether individuals were found to be CDKN2A carriers or noncarriers. Rates of over screening (>1 skin self-examination per mo) also increased in CDKN2A carriers. In a follow-up study one month later with the same sample, CDKN2A carriers showed marginally increased intentions for sun-protective behaviors; CDKN2A noncarriers showed no increase in overall photoprotection but a shift to using sun-protective clothing rather than sun avoidance.
In Australia, 121 individuals with a strong family history of melanoma completed questionnaires prior to genetic counseling and testing. Distress (melanoma-specific distress and general distress) levels were very low in this population. The most important predictors of distress included the following:
- A prior personal history of melanoma.
- The belief that there were family risk implications of getting melanoma (including concerns about their children developing melanoma in the future, and the perceived impact of having a family history of melanoma on their lives in general).
- A preference for receiving highly detailed health information (monitoring style).
- Perceived importance of sun exposure in causing melanoma.
- Not having children.
Risk Awareness, Risk Reduction, and Early Detection Behaviors in Individuals at Heightened Genetic Risk for Melanoma
A number of studies have been conducted examining risk reduction via adoption of sun protection (including the use of sunscreen and protective clothing and shade seeking) and early-detection behaviors (including health-care provider screening and skin self-examination) in individuals with a family history of melanoma. Overall, these studies indicate inconsistent adoption and maintenance of these behaviors. Most of these studies have been conducted with clinic-based populations that might be more prone to risk reduction and screening behaviors than those with a similar risk profile in the general population.
In terms of sun protection, in a Swedish population, 87 young adults with dysplastic nevi were surveyed, and 70% estimated their melanoma risk to be equal or lower than that of the Swedish population in general, and one third reported frequent sunbathing behavior. Another study examined 229 first-degree relatives (FDRs) referred by melanoma patients attending clinic appointments; those who were older, female, and had greater confidence in their ability to practice sun-protection were most likely to do so, but the utilization of sun-protective behavior was inconsistent. Another study in the United States examined sun-protective behavior in 100 FDRs of melanoma clinic patients and found that less than one-third of patients use sunscreen routinely when in the sun, and that more regular usage was related to higher education levels, higher self-efficacy for sun protection, and higher perceived melanoma risk. Perceived severity of melanoma and response-efficacy were not related to adoption of sun-protective behaviors.