This study assesses regular sun protection and skin screening practices in individuals recently diagnosed with a first primary melanoma, and is among the first to examine these issues in a population-based sample collected outside the clinic setting. In terms of SSE, few participants consistently practiced comprehensive SSE (17%), and most participants reported inconsistent SSE across anatomic sites. For example over 60% reported that they regularly examined their arms and face, but fewer than 40% reported examining other anatomic sites such as regions of the back. One consequence of this may be that melanoma survivors might find abnormalities more readily during casual day-to-day activities such as dressing or grooming, but may miss skin changes on areas of the body that are less easily observed, such as the lower back. These rates of comprehensive SSE are comparable to those reported for melanoma survivors drawn from clinical populations (14% to 33%;[36
]) and are also consistent with the general population (9-18%;[8
]. Rates of adherence with other patient-initiated screening strategies in cancer survivors are quite consistent with our findings. For example, in a recent follow-up of survivors of childhood cancer, approximately 27% of females reported breast self-exam and 17% of males reported testicular self-exam [39
]. A comparable rate of testicular self-exam was also recently reported [40
]. In a study of breast cancer survivors, monthly breast self-exam was reported in 40% of the women [41
]. In contrast, however, rates of clinically recommended screening strategies performed by physicians in clinic settings including mammography, clinical breast examination, prostate-specific antigen testing, and fecal occult blood testing are significantly higher among cancer survivors than in the general population [42
]. Accordingly, factors related to the adoption of clinical as well as self-administered strategies may be different and require distinct intervention strategies to improve continued maintenance in survivorship cohorts.
Despite the evidence that melanoma recurrences and second primary diagnoses are often found by patients themselves [2
], and that subsequent diagnoses tend to be thinner than initial diagnoses [43
], this study documents useful opportunities for behavioral intervention to increase utilization of thorough, full-body SSE in melanoma survivors. In particular, these patients may need encouragement to engage family members in helping them see parts of the body that are less easily observed in casual activities.
Sun protection practices were also performed inconsistently. Only about one quarter of the participants in the current study (23%) practiced regular sun protection. Similarly, Manne and Lessin (2006) [37
] recently documented that among melanoma survivors drawn from physician practices, average habitual sun protection practices (sunscreen, protective clothing use) fell between “sometimes” and “often.” We found that use of sunscreen was the most frequently utilized strategy of sun protection, with more than half (57%) in our population-based sample reporting that they used sunscreen always or nearly always. These rates exceed those reported in the general population (28% to 32%; [44
]. Similarly, Lee et al. (2007) [46
] reported that melanoma patients were spending less time outdoors than non-melanoma controls and were using protective means such as clothing and sunscreen while out in the sun. However, these rates are lower than that reported for post-surgical patients with non-melanoma skin cancer, where 68% reported regular use of sunscreen after their recovery from surgery [47
]. Recent population-based estimates show that rates of deleterious sun exposure in cancer survivors are similar to those reported for the general population [48
]. Overall, this study shows that the rates of melanoma-related protective behaviors after diagnosis do not consistently exceed that reported in general population samples. The exception is sunscreen use, which alone is not adequate sun protection [49
]. Given the clinical recommendations to perform these behaviors, these findings indicate the need for enhanced education and counseling about sun protection and skin examination for melanoma survivors.
Our findings also indicate that measurement strategies for melanoma health behaviors may not completely capture the health behavior choices made by these survivors. Interestingly, 10% of this sample reported complete sun avoidance; therefore questions about sun protection strategies were not relevant. While the numbers are small, this group was also on average older than the remaining sample. Complete sun avoidance might be associated with significant cancer-related distress, and may also limit physical activity and recreation critical to the reestablishment or maintenance of survivors' physical health, mental health, and quality of life. As well there is suggestion that some sun exposure prior to diagnosis may be protective against melanoma-related mortality [9
]; as such, this phenomenon warrants further examination among melanoma survivors. This phenomenon reflects a potential limitation in transferring measurement strategies validated in the general population to melanoma survivors without pilot testing and revalidation.
Those participants who reported moles and higher SSE self-efficacy were more likely to conduct SSE. Although our estimate for the association between SSE self-efficacy and SSE itself were significant, the confidence intervals were wide. With larger sample sizes, it is possible that our estimates may become attenuated. It is likely that those with moles may have received clearer or more frequent physician recommendation for SSE, and over half of the participants reported having moles (few to many). The findings from the current study are consistent with findings drawn from other samples at high risk for melanoma [51
]. More surprisingly, however, performance of SSE was not significantly related to perceived risk, other demographic or risk factors, or cancer history or family history. This is inconsistent with prior literature examining predictors of SSE in high-risk groups in which younger age, education, optimism, recent exams or instruction, and concern for cancer were all associated[12
In terms of regular sun protection, those who were older, female, and had greater confidence in their ability to practice sun protection were most likely to do so. Again, our degree of confidence in the positive association between self-efficacy and this behavior itself may be diminished by the small numbers in our study. In prior studies assessing predictors of sun protection in first-degree relatives of melanoma patients, self-efficacy but not age or gender were related to increased utilization of sun protection [55
]. Geller and colleagues [53
] found that female first-degree relatives were more likely to use sunscreen than males, but did not assess self-efficacy for sun protection. Prior research examining health behaviors after melanoma diagnosis show physician recommendation to engage in SSE, physician examination, and sun protection increase after melanoma diagnosis, but are by no means universal [57
]. Therefore, we cannot assume that those diagnosed with melanoma will be more likely to adopt prevention and control efforts after their diagnosis. Intervention efforts should address and support self-efficacy for SSE [51
] and sun protection. Further research is needed to clarify the extent of physician counseling and education after melanoma diagnosis, as well as the impact on patients' adoption of behavioral strategies after receipt of this advice.
We note some limitations in this study. The behaviors reported here were based on self-report and not direction observation and this may potentially affect what melanoma patients may recall or want to report about their behaviors. We encouraged honesty by assuring that a wide range of health behaviors were normal, and that their honest responses would aid in the development of future education programs. It is possible that social desirability bias, or the desire for participants to over report disease-prevention activities, was influential to our participants' responses especially given the fact that these are cancer survivors and that the surveys were completed via telephone. Recall bias, or the inability to correctly recall accurate behaviors may have also been a limitation as time had elapsed from diagnosis to interview. The average length of time from diagnosis to participation was 1.7 years, although telephone interviews are a well-accepted strategy for eliciting self-reported behavioral information [58
]. These factors should be taken into account in future research targeting cancer survivors with respect to screening practices.
Furthermore, our population was small and typically an older, largely female group that might not be fully representative of all melanoma survivors. Demographic and cutaneous characteristics were similar throughout the group and consistent with classic risk factors for melanoma. Additionally, we evaluated self-efficacy and behaviors at the same time point, ruling out the possibility of evaluating predictive relationships between these variables. We did not collect information concerning whether each participant had received physician recommendation or behavioral education, which would have been a useful factor to consider in their adoption of these behaviors. Finally, we did not comprehensively examine potential attitudinal or psychosocial factors that may be related to the uptake of SSE and sun protection strategies due to space constraints. This study, however, is among the first to examine behavioral prevention and control in survivors in a population-based sample, which increases our ability to generalize these findings to the general population of survivors who may not be seen in clinic settings. Descriptive work examining screening and sun protection strategies, as well as other aspects of melanoma survivorship, is critically needed to develop appropriate intervention strategies to increase the quality and length of life among these individuals.
Multiple studies on survivorship have found that rates of behavioral counseling are not ideal in these populations. Survivors themselves report the need for further information regarding guidelines for follow-up care and surveillance [59
]. The Institute of Medicine's Executive Summary on survivorship has stressed that prevention for recurrence, surveillance for cancer spreading, and specific information on the timing and content of follow-up should be part of a patient's care plan following diagnosis and treatment [61
]. Survivors report an interest in self-care practices and in receiving evidence-based information [60
]. Caregivers including nurse practitioners report providing education less often than they should [63
]. Nurses and primary care physicians together can reinforce and encourage prevention practices [64
] and can play a pivotal role in reducing the disease burden of malignant melanoma [63
]. Specifically, preventive sun advice mediated by a doctor's consultation, didactic tools such as a photo test, or information on tanning have been well received and show positive delivery to patients, especially those at-risk [66
]. Performing regular full-body examinations and sun protection practices and avoidance of tanning booths are all documented detection and prevention practices [65
] and should be continuously practiced. Risk behaviors such as smoking and diet have been reported to be discussed more than the topic of sun exposure, and patient counseling has been correlated with prior advice, multiple visits and higher satisfaction with care [59
]. Furthermore, efforts such as combining with other cancer prevention programs or screening in the workplace have already proven to be successful in increasing uptake of sun protection practices and noting a substantial decrease in incidence of thick melanomas [68
]. Continued efforts on caregivers' parts to educate, reassure, and reinforce practices can continue to satisfy melanoma survivor's needs for evidence-based information. The timing and content of follow-up can help to improve detection and prevention, even after diagnosis and treatment of this disease.
We found that among melanoma survivors drawn from the general population, rates of performing thorough SSE and engaging in sun protection strategies are comparable to, but do not exceed general population estimates of these behaviors. Sunscreen use was slightly higher here than in the general population. The use of these preventive strategies was not consistently related to medical factors or cutaneous risks for melanoma, or to previous or family history of cancer. Strategies to increase utilization of SSE should address the idea that exams may help to find new melanomas at a very early stage considering melanoma can be a severe disease. Patients should be counseled that they are at a markedly higher risk for a second primary melanoma at any body site. This study provides justification for intervention research to increase prevention and control practices in melanoma survivors.