Consent and Identifiability for Patient Images in Research, Education, and Image-Based Artificial Intelligence.

This survey study reports the perspectives and preferences of US adults regarding use of photographs of their skin in medical research, education, and development of image-based artificial intelligence (AI).

Exploring the role of cancer fatalism and engagement with skin cancer genetic information in diverse primary care patients.

OBJECTIVE: To broaden the currently limited reach of genomic innovations, research is needed to understand how psychosocial and cultural factors influence reactions to genetic testing in diverse subgroups. Cancer fatalism is important in cancer prevention and deserves theoretical and empirical attention in the context of genomics and behavior change. METHODS: The current study employed data from a randomized controlled trial (N = 593) offering skin cancer genetic testing (using the melanocortin-1 receptor [MC1R] gene) in primary care in Albuquerque, New Mexico, USA. We examined interrelations of cancer fatalism with demographics, general health beliefs, perceived risk, perceived control, sun protection and skin screening behaviors and cancer worry in the skin cancer context stratified across Hispanic versus non-Hispanic ethnicity, and examined cancer fatalism as a moderator of intervention effects on study primary outcomes, including 3-month sun protection, cancer worry and perceived risk. RESULTS: Cancer fatalism was significantly related to the perception of control over skin cancer risk behaviors (ps ≤ 0.01) and demographics (ethnicity, education, health literacy; ps < 0.05), but not consistently related to general health beliefs or risk perception. Cancer fatalism did not moderate intervention effects on primary outcomes, except those with higher cancer fatalism randomized to intervention had higher levels of 3-month cancer worry (p = 0.019). CONCLUSIONS: These findings will guide future work considering the role of cancer fatalism in use of genomic technologies in the general population. This work anticipates strategies required to address cancer fatalism as translational genomics becomes more commonly available to diverse general population subgroups.

Colorectal cancer information avoidance is associated with screening adherence.

Colorectal cancer (CRC) is the fourth most common cancer among U.S. men and women and the second deadliest. Effective screening modalities can either prevent CRC or find it earlier, but fewer than two thirds of U.S. adults are adherent to CRC screening guidelines. We tested whether people who defensively avoid CRC information have lower adherence to CRC screening recommendations and weaker intentions for being screened and whether CRC information avoidance adds predictive ability beyond known determinants of screening. Participants, aged 45-75 years, completed a survey about known structural determinants of CRC screening (healthcare coverage, healthcare use, provider recommendation), CRC information avoidance tendencies, and screening behavior (n = 887) and intentions (n = 425). Models were tested with multivariable regression and structural equation modeling (SEM). To the extent that participants avoided CRC information, they had lower odds of being adherent to CRC screening guidelines (OR = 0.55) and if non-adherent, less likely to intend to be screened (b=-0.50). In the SEM model, avoidance was negatively associated with each known structural determinant of screening and with lower screening adherence (ps < 0.01). Fit was significantly worse for nested SEM models when avoidance was not included, (i.e., the paths to avoidance were fixed to zero). Information avoidance was associated with screening behavior and other known structural determinants of screening adherence, potentially compounding its influence. Novel strategies are needed to reach avoiders, including health communication messaging that disrupts avoidance and interventions external to the healthcare system, with which avoiders are less engaged.

Protocol for a cluster-randomized trial of a school-based skin cancer preventive intervention for adolescents.

BACKGROUND: Adolescents infrequently use sun protection and engage in intentional tanning more frequently compared to other age groups, leading to increased ultraviolet radiation (UVR) exposure that heightens skin cancer risk across the lifespan. High schools are therefore an ideal setting for offering skin cancer preventive interventions. Yet, there are limited UVR protection interventions for high school students, especially those that are personalized, tested using randomized designs, and include long-term outcome assessment to determine the durability of intervention effects. METHOD: The Sun-safe Habits Intervention and Education (SHINE) cluster-randomized trial will test a novel, personalized intervention that targets high school adolescents' sun protection and tanning behaviors, and tracks their outcomes for up to one year following intervention. Enrolled high schools will be randomized to receive either the personalized SHINE intervention, which includes facial UVR photographs and sun protection action planning, or standard education using publicly available materials. Students in both conditions will receive information about skin cancer, sun protection, and skin self-examination. Outcome variables will include students' sun protection and tanning behaviors and sunburn occurrence. Potential moderators (e.g., race/ethnicity) and mediators (e.g., self-efficacy) will also be assessed and tested. CONCLUSIONS: This trial examines the efficacy of a personalized intervention targeting sun protection and tanning of high school students. The project will lead to new scientific understanding of the theoretical mechanisms underlying outcomes and moderators of the intervention effects, which will inform future intervention tailoring to meet the needs of vulnerable subgroups.

Moderating influences on parents' fatalistic beliefs about cancer and their association with sun safety behaviors among children of melanoma survivors: Implications for treatment.

The purpose of this study is to examine the association between parents' fatalism about melanoma and their children's sun protection, and the potential moderating role of parent-child communication. In this observational study of N = 69 melanoma-surviving parents of children ages 8-17, parents reported on their own melanoma fatalism, as well as their children's sun safety behaviors and parent-child discussion about sun safety. Parent gender, family history of melanoma, and frequency of parent-child discussions moderated the relationship between parents' fatalism and children's sun safety behaviors. Among mothers and parents with a family history of melanoma, high fatalism was associated with lower child sunscreen use, especially when discussions were less frequent. Melanoma surviving parents' fatalistic beliefs about cancer indirectly influence their children's health behavior and are a risk factor for unsafe sun behavior. Attending to parent gender, family history, and their communications about protective behaviors as co-factors of this risk could inform future intervention targeting.

Reasons people avoid colorectal cancer information: a mixed-methods study.

OBJECTIVE: With screening, colorectal cancer can be detected when treatable, or even prevented. However, approximately one in five people tend to avoid colorectal cancer information, and avoidance is associated with being less likely to have been screened for the disease. Crucial to developing strategies to reduce information avoidance, we sought a comprehensive understanding of reasons people avoid colorectal cancer information. METHODS AND MEASURES: In a mixed methods study, we surveyed 200 participants who varied with respect to avoidance and interviewed 15 people who tended to avoid colorectal cancer information (all aged 40-75) about reasons for avoiding. RESULTS: In both survey and interviews, primary reasons for information avoidance were: (1) shielding from anxiety and other aversive emotion, (2) perceived information sufficiency and (3) feelings of information overload. Trait anxiety, fear of diagnosis, anticipating negative interactions with healthcare, and negative associations with screening procedures exacerbated avoidance. Participants justified information non-relevance by attributing risk to other people's characteristics such as family history, gastrointestinal symptoms, being male, or living an unhealthy lifestyle. CONCLUSION: Novel findings include the triggering influence of trait anxiety and financial constraints on information avoidance. Also, information overload and incorrect understanding of risk factors may exacerbate perceptions of information sufficiency and avoidance.

The Family Lifestyles, Actions and Risk Education (FLARE) study: Protocol for a randomized controlled trial of a sun protection intervention for children of melanoma survivors.

BACKGROUND: Children of parents who had melanoma are more likely to develop skin cancer themselves owing to shared familial risks. The prevention of sunburns and promotion of sun-protective behaviors are essential to control cancer among these children. The Family Lifestyles, Actions and Risk Education (FLARE) intervention will be delivered as part of a randomized controlled trial to support parent-child collaboration to improve sun safety outcomes among children of melanoma survivors. METHODS: FLARE is a two-arm randomized controlled trial design that will recruit dyads comprised of a parent who is a melanoma survivor and their child (aged 8-17 years). Dyads will be randomized to receive FLARE or standard skin cancer prevention education, which both entail 3 telehealth sessions with an interventionist. FLARE is guided by Social-Cognitive and Protection Motivation theories to target child sun protection behaviors through parent and child perceived risk for melanoma, problem-solving skills, and development of a family skin protection action plan to promote positive modeling of sun protection behaviors. At multiple assessments through one-year post-baseline, parents and children complete surveys to assess frequency of reported child sunburns, child sun protection behaviors and melanin-induced surface skin color change, and potential mediators of intervention effects (e.g., parent-child modeling). CONCLUSION: The FLARE trial addresses the need for melanoma preventive interventions for children with familial risk for the disease. If efficacious, FLARE could help to mitigate familial risk for melanoma among these children by teaching practices which, if enacted, decrease sunburn occurrence and improve children's use of well-established sun protection strategies.

PRO-CTCAE reveals under-recognition of dermatologic symptom burden in hospitalized cancer patients.

PURPOSE: Dermatologic adverse events (dAEs) occur frequently in hospitalized patients and can significantly reduce quality of life. Physicians grade dAEs using the Common Terminology Criteria of Adverse Events (CTCAE). However, they often underestimate symptom frequency and severity. The patient-reported outcomes (PRO) version of the CTCAE (PRO-CTCAE) was developed to assess symptoms from the patient's perspective. In this study, we assessed the patient-reported burden of dAEs via the PRO-CTCAE questionnaire and compared results with dAE assessment by treating oncologists and dermatologists. METHODS: Patients admitted to Memorial Sloan Kettering Cancer Center from 6/1/2018 to 4/30/2019 and received a dermatology consultation were eligible. Once enrolled, participants completed a PRO-CTCAE questionnaire on 14 dermatologic symptoms. CTCAE grades assigned by oncology and dermatology were obtained from clinical notes, and kappa statistics were calculated to evaluate the level of agreement between physician and patient evaluations. RESULTS: A total of 100 patients (mean age 59.4, 55% male) were prospectively enrolled. The most common patient-reported dAEs were rash (72%), swelling (67%), pruritus (64%), bruising (53%), and hives (37%). Oncologists and dermatologists underreported dAEs except for rash (median kappa values 0.3 [0.02-0.84] and 0.32 [0.02-0.87], respectively). Oncologists and dermatologists were concordant with each other's documented assessment of dAEs (median kappa value 0.985 [0.55-1]). CONCLUSION: Oncology patient-reported dAEs in a tertiary academic oncologic referral center were under-recognized by providers. PRO-CTCAE may be a useful tool to optimize inpatient dermatologic care for cancer patients by detecting and allowing management of patient-reported dAEs.

Development of a novel measure of advanced cancer patients' perceived utility of secondary germline findings from tumor genomic profiling.

Objective: Tumor genomic profiling (TGP) can inform advanced cancer patients' treatment decisions, and also reveal secondary germline findings-information about inherited risks for cancer and other disorders. We sought to develop a measure of patient perceptions of the clinical and personal utility of secondary germline findings. Methods: We developed a draft survey based on literature and patient interview data (n=40). We evaluated and refined the survey through cognitive interviews with advanced cancer patients who received secondary germline findings from TGP (n=10). The survey was psychometrically validated with data from two independent samples of advanced cancer patients undergoing TGP (total n=349). Results: Cognitive interviews offered opportunities for survey refinement and confirmation of its comprehensible nature. Exploratory and confirmatory factor analysis of the survey identified 16 items across three subscales with strong internal consistency (Cronbach's alpha ≥0.79): perceived utility for others, perceived utility for self and health, and confidence in secondary findings. Conclusion: We developed a novel valid scale with promise for measuring advanced cancer patients' perceptions of the utility of secondary germline findings. Innovation: We offer a new patient-derived measure of perceived utility of and confidence in secondary germline findings with potential applications for precision oncology research and clinical communication.

Decision-Making and Health-Related Quality of Life in Patients with Melanoma Considering Adjuvant Immunotherapy.

BACKGROUND: Adjuvant anti-PD1 treatment improves relapse-free survival (RFS) but has not been shown to improve overall survival (OS) in melanoma and is associated with risks of immune-related adverse events (irAEs), some permanent. We identified factors patients consider in deciding whether to undergo adjuvant anti-PD1 treatment and assessed prospective health-related quality of life (HRQoL), treatment satisfaction, and decisional regret. PATIENTS AND METHODS: Patients with stage IIIB-IV cutaneous melanoma and free of disease, were candidates for adjuvant anti-PD1 immunotherapy, and had not yet discussed adjuvant treatment options with their oncologist were eligible. Participants viewed a 4-minute informational video tailored to their disease stage which communicated comprehensive, quantitative information about the risk of relapse both with and without adjuvant treatment, and risks of each irAE before deciding whether or not to opt for adjuvant therapy. We collected data on demographics, HRQoL, and attitudes toward adjuvant treatment over 1 year. RESULTS: 14/34 patients (41%) opted for adjuvant anti-PD1 immunotherapy, 20/34 (59%) opted for observation. Patients choosing adjuvant immunotherapy scored higher on HRQoL social well-being at pre-treatment, were more likely to endorse positive statements about adjuvant immunotherapy, and to perceive that their physician preferred adjuvant therapy. They had lower decisional regret and higher satisfaction, even if they experienced toxicity or recurrence. CONCLUSIONS: When provided with comprehensive quantitative information about risks and benefits of adjuvant anti-PD1 immunotherapy, 20/34 (59%) of patients opted for observation. Patients choosing adjuvant immunotherapy had lower decisional regret and higher satisfaction over time even if they had poorer outcomes in treatment.

Moving beyond the "Health Halo" of Alcohol: What Will it Take to Achieve Population Awareness of the Cancer Risks of Alcohol?

We discuss the implications of Seidenberg and colleagues' report confirming low levels of accurate awareness of the cancer harms associated with alcohol use, including wine, beer, and liquor consumption. The authors propose that academic and lay messaging describing consumption of wine and other forms of alcohol as reducing heart disease risk has created generalized beliefs about the health benefits of drinking alcohol. This "health halo" surrounding alcohol consumption leads the public to overgeneralize alcohol health benefits to other diseases, including cancer. We discuss the need to address high levels of perceived risk uncertainty to help the public distinguish between the impact of alcohol on heart disease versus cancer, and to overcome other barriers to including alcohol use reduction as a cancer prevention strategy. Given recent increases in U.S. population drinking rates, as well as morbidity and mortality associated with alcohol use, the time is right to marshal multilevel efforts to educate the public regarding the fact that alcohol is carcinogenic. If successful, these efforts will have multiple downstream benefits, including the ability of the lay public to use the most up-to-date scientific evidence to make informed decisions about whether, and how much, to engage in a risky behavior. See related article by Seidenberg et al., p. 46.

Associations between social COVID-19 exposure and psychological functioning.

The negative consequences of the COVID-19 pandemic on mental health have been widely reported, but less is known about how the impact of COVID-19 on others in one's social circle shapes these high distress levels. This study examines associations between social COVID-19 exposure-knowing someone who had a COVID-19 infection-and psychological functioning, as well as whether socio-demographic factors moderate these relationships. In June 2020, respondents (N = 343) from clinics in Tampa, Florida, U.S.A. reported whether they had social COVID-19 exposure, anxiety, depression, and stress, and other COVID-19-related concerns. Social COVID-19 exposure was associated with increased anxiety, stress, and concerns about a family member getting sick, and concerns about drinking and substance use. Several associations between exposure and psychological functioning were stronger in women, younger people, and people with lower income, implying these groups face elevated psychological risks due to the pandemic, and should be prioritized in mental health recovery efforts.

Increasing Skin Cancer Prevention in Young Adults: the Cumulative Impact of Personalized UV Photography and MC1R Genetic Testing.

Skin cancer has become increasingly common among young adults; however, this population does not consistently adhere to recommended methods for preventing the disease. Interventions in college settings have relied on appearance-focused appeals and have not been able to examine the cumulative effect of multiple behavior change and skin cancer risk communication strategies. The goal of the current study was to examine the unique and combined impacts of personalized ultraviolet (UV) radiation photographs, genetic testing for skin cancer risk, and general skin cancer prevention education. Participants were randomly assigned to one of four conditions: (1) skin cancer prevention education, (2) education + UV photo, (3) education + genetic testing, and (4) education + UV photo + genetic testing. Self-reported sun protection, tanning, and sunburn were assessed at baseline, immediately post-intervention, and 1 month post-intervention. The findings indicated benefits of the interventions to skin cancer prevention behaviors in the overall sample; however, the combined (UV photo + genetic testing) intervention had the most consistent positive effects on behaviors. Intervention effects were distinct across seasons. These results suggest that interventions containing multiple skin cancer risk communication strategies hold promise in benefitting health-promoting behavior changes in an at-risk, young adult population.Trial Registration Number: NCT03979872; Registered 6/5/2019.

Worldview Orientations and Personal and Social Risk Perceptions for COVID-19 in a U.S. Population-Based Sample.

Adoption of COVID-19 preventive behaviors involves considering personal risk and the risk to others. Consequently, many COVID-19 prevention measures are intended to protect both the individual engaging in the behavior and others in the population. Yet, the preponderance of research is focused on perceptions of an individual's personal risk, making risk perception for others a critical area for investigation. Two worldview orientations describing values regarding how society should be organized, hierarchy-beliefs prioritizing social hierarchy, and individualism-beliefs prioritizing personal autonomy, have been linked to a range of risk perceptions. This study objective is to examine the association of worldview orientations with COVID-19 risk perceptions for oneself and others in a United States context. Using a national sample of 410 U.S. adults, we examined the associations between worldview orientations and six facets of risk (absolute risk, risk certainty, comparative risk, risk severity, fear, feelings of risk) using demographics-adjusted multivariable regression models. We conducted separate analyses for each of the following referents: (1) personal risk, (2) risk for the average person within the United States, and (3) risk to people within specific social groups (e.g., family, co-workers). Results indicate that stronger hierarchical and individualistic orientations were associated with lower COVID-19 risk perceptions for all three referents. The results were particularly consistent for fear and feelings of risk. Individualism was related to higher risk perception certainty for personal risk and the risk to people within specific social groups. Hierarchy was related to lower perceived severity for all referents. Findings suggest that U.S. public health messaging sensitive to worldview orientations may be needed to optimize acceptance of recommendations for protective behaviors, including vaccination. The relationship of worldview orientations to health risk perceptions may help guide messaging for future infectious outbreaks where risk perceptions are t drivers of protective behavior.

I don't know my child's asthma risk: evidence against satisficing as an explanation for 'don't know' responses.

Several studies suggest that "don't know" (DK) responses to risk perception items may represent meaningful expressions of uncertainty about disease risk. However, researchers are often discouraged from including a DK response option in survey items due to concerns about respondents overusing it to minimize cognitive effort-a phenomenon often referred to as satisficing. Our objective was to investigate whether patterns of DK responses to risk perception survey items were consistent with satisficing behavior. We conducted a secondary analysis of survey data from 814 parents and guardians (hereafter caregivers) of children with asthma. Caregivers answered 18 items assessing their perceived risk of their child experiencing two types of poor asthma outcomes: asthma exacerbation, and low asthma control. We examined differences in the frequency and distribution of DK responses across all 18 items and by type of risk perception item (i.e., 2 vs. 5 response options, absolute vs. comparative risk). We found that 32% (n=548) of respondents marked DK at least once. Of the 266 caregivers who provided any DK response, most did so for only 1 or 2 items (51.9%, n=138), and only 6% (n=15) answered DK to more than half of the items. Using random coefficient Poisson models, we found more DK responding for dichotomous absolute (30.1%) than ordinal absolute items (5.3%), b=1.72, p<.001. We also found fewer DK responses to the ordinal absolute items than the comparative items (8.2%), b=-0.49, p<.001. Using Chi-square tests, we found that inattentive responding was not associated with responding DK. Our findings suggest that satisficing is unlikely to completely explain DK responding to perceived risk survey items. Researchers who exclude DK response options from risk perception survey items may obtain an incomplete understanding of their study sample's beliefs about risk.

'I had a bigger cancer risk than I thought ': The experience of receiving personalized risk information as part of a skin cancer prevention intervention in the college setting.

BACKGROUND: Diagnoses of both melanoma and nonmelanoma skin cancers are becoming increasingly common among young adults. Interventions in this population are a priority because they do not consistently follow skin cancer prevention recommendations. OBJECTIVES: The goal of the current study was to examine college students' perspectives on and experience with receiving a skin cancer prevention intervention that provided personalized skin cancer risk feedback in the form of an ultraviolet (UV) photograph, the results of genetic testing for common skin cancer risk variants, and/or general skin cancer prevention education. METHODS: Qualitative interviews were conducted with 38 college students who received a skin cancer prevention intervention. The interview covered students' feelings about their personal skin cancer risk information, the impact of the intervention on their skin cancer risk perceptions, actions or intentions to act with regard to their sun protection practices and feedback for improvement of the intervention content or delivery. RESULTS: Participants reported that different intervention components contributed to increased awareness of their sun protection behaviours, shifts in cognitions about and motivation to implement sun protection strategies and reported changes to their skin cancer prevention strategies. CONCLUSION: Our findings indicate that college students are interested in and responsive to these types of multicomponent skin cancer preventive interventions. Further, students demonstrate some motivation and intentionality toward changing their skin cancer risk behaviour in the short term. PATIENT OR PUBLIC CONTRIBUTION: Participants involved in this study were members of the public (undergraduate students) who were involved in a skin cancer prevention intervention, then participated in semistructured interviews, which provided the data analysed for this study.

Race/Ethnicity, Nativity Status, and Patient Portal Access and Use.

We examined whether patient portals (online medical records) access and use differed between groups of various races/ethnicities and nativity status. We used data from the nationally representative Health Information National Trends Survey (N=3,191). We used logistic regression to examine associations between nativity status and the following three binary outcomes: (1) being offered access to patient portals by patients' health care providers/insurers, (2) being encouraged to use one by their health care providers, and (3) having used one within the past 12 months. We also investigated whether race/ethnicity moderated the relation between nativity status and these three outcomes. Among Asians, the likelihood of being offered access to a patient portal depended on nativity status. U.S.-born Asians had the highest rate of being offered access to a portal (66%) and foreign-born Asians had the lowest rate (38%). There were no differences as a function of nativity status for other races/ethnic groups.

Interest and Utility of MC1R Testing for Melanoma Risk in Dermatology Patients with a History of Nonmelanoma Skin Cancer.

Public access to genetic information is increasing, and community dermatologists may progressively encounter patients interested in genetic testing for melanoma risk. Clarifying potential utility will help plan for this inevitability. We determined interest and uptake of genetic risk feedback based on melanocortin receptor gene (MC1R) variants, immediate (two weeks) responses to risk feedback, and test utility at three months in patients (age ≥ 18, with a history of nonmelanoma skin cancer). Participants (N = 50) completed a baseline survey and were invited to consider MC1R testing via the study website. Testing interest and uptake were assessed through registration of test decision, request of a saliva test kit, and kit return (all yes/no). Immediate responses to risk feedback included feedback-relevant thoughts, emotions, communication, and information seeking after result receipt; test utility outcomes included family and physician communication and information seeking. Results indicated good retention at both time points (76%; 74%). Half (48%) logged onto the study website, and of these, most (92%) chose testing and (95%) returned a saliva sample. After two weeks, most (94%) had read all the risk feedback information and distress was low (M = 8.81, 7-28, SD = 2.23). Many (69%) had talked with their family about the results. By three months, most had spoken with family (92%) and physicians (80%) about skin cancer risk. Physician communication was higher (70%) in those tested versus those not tested (40%, p = 0.02). The substantial interest and promising outcomes associated with MC1R genetic testing in dermatology patients inform intervention strategies to enhance benefits and minimize risks of skin cancer genetic testing.

Prevention is political: political party affiliation predicts perceived risk and prevention behaviors for COVID-19.

BACKGROUND: Many US politicians have provided mixed messages about the risks posed by SARS-CoV-2/COVID-19 and whether and to what extent prevention practices should be put in place to prevent transmission. This politicization of the virus and pandemic may affect individuals' risk perceptions and willingness to take precautions. We examined how political party affiliation relates to risk perception for one's own and other people's likelihood of SARS-CoV-2 infection/COVID-19 illness. METHODS: We surveyed members of a nationally-representative, probability-sampling based survey panel (N = 410) to examine their risk perceptions, precautionary behaviors, and political party affiliation. RESULTS: The more strongly one identified as a Republican, the less risk one perceived to oneself from SARS-CoV-2/COVID-19 and the less risk one perceived other people faced. Moreover, those identifying as more strongly Republican engaged in fewer preventive behaviors. CONCLUSIONS: This differential response may affect virus transmission patterns and poses a considerable challenge for health communications efforts.