A content analysis of parents' reflections on pathogenic and uncertain pediatric oncology germline sequencing results.

Germline genomic sequencing is increasingly integrated into pediatric cancer care, with pathogenic cancer-predisposing variants identified among 5-18% of affected children and variants of uncertain significance (VUS) in up to 70%. Given the potential medical implications for children and their families, parents' psychosocial responses to learning results are important to understand. Parents of children with cancer who learned their children's germline pathogenic or VUS results following paired tumor and germline genomic sequencing described their cognitive and affective responses to results in an open-ended write-in question after disclosure (M = 10 months post-disclosure; range = 1-28). Responses were coded and categorized using content analysis, then compared across results using chi-square and Fisher's exact test. Parents of children with pathogenic (n = 9), VUS (n = 52), and pathogenic plus VUS results (n = 9) described negative emotions, positive reactions, mixed emotions (i.e., positive and negative emotions), and neutral reactions. Negative emotions were described significantly more frequently with pathogenic results than VUS only (χ2 = 5.19; p = .02), with peace of mind and empowerment only described for those with VUS. Parents also described approach(es) to coping (e.g., faith, plan of action) and reactions specific to the uncertainty of VUS (e.g., disappointment at no explanation for cancer etiology). A subset with VUS described decreasing worry/distress with increased understanding of results, whereas others displayed misconceptions regarding VUS. Screening for emotional adjustment is warranted for parents of children with cancer receiving pathogenic germline results, and screening for understanding is warranted with VUS. Findings highlight the importance of pre-and posttest genetic counseling.

Leveraging Maker Learning in STEM to Promote Children's Interest in Cancer Research: A Pilot Program.

Children's early awareness about cancer, through exposure to cancer biology and prevention strategies and research principles, is a promising focus of education and learning. It may also benefit the pipeline of people entering into science, technology, engineering, and math (STEM) careers. We describe an educational pilot program for elementary school students, using developmentally appropriate activities focused on cancer at a museum dedicated to children's maker-centered learning and STEM. The program was implemented through a public school in Washington, DC serving students underrepresented in STEM. Program conceptualization, museum and school engagement, and maker learning pedagogy are described, as well as curricular outcomes. A total of N = 111 students (44% female, 75% Black/African American, 5% Latine) participated in a day-long field trip. Museum educators, assisted by cancer center researchers, led a multipart workshop on cancer and the environment and hands-on rotation of activities in microbiology, immunology, and ultraviolet radiation safety; students then completed self-report evaluations. Results indicate that nearly all (> 95%) students practiced activities typical of a STEM professional at the program, and > 70% correctly answered factual questions about topics studied. Importantly, 87-94% demonstrated clear STEM interest, a sense of belonging in the field, and practice implementing skills for success in STEM (e.g., perseverance, imagination, teamwork). This pilot demonstrated acceptability and feasibility in delivering a cancer-focused curriculum to underserved elementary students using maker learning while favorably impacting key objectives. Future scale-up of this program is warranted, with the potential to increase students' motivation to engage in STEM and cancer research.

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.

A multilevel intervention in pediatric primary care for youth tobacco control: Outcomes of implementing an Ask, Advise, and Connect model.

Multilevel interventions in healthcare settings (e.g. Ask, Advise, and Connect; AAC) can reduce tobacco product use among adult patients: their effectiveness in pediatric practice is largely unknown. We implemented an AAC model in pediatric primary care to deter children's tobacco use, and evaluated its effectiveness in a single-arm trial. At wellness visits, young patients (ages 12-17) completed a tablet-based assessment (Ask) of lifetime and current tobacco use. These data were made available within the electronic health record to pediatric primary care providers for preventive counseling (Advise). Providers then referred patients to an e-health evidence-based tobacco control intervention (Connect). Tobacco control outcomes were examined in the clinic population (N = 2219) and in a sample of patients (N = 388, 62% female, 39% non-White, M age = 15) over time, along with intervention engagement. Population use of tobacco products decreased following introduction of AAC (more than 2-fold). At the patient level, most children (80.9%) engaged with the intervention: those who were Black or African American, who never used tobacco products/were not susceptible to use, and who used fewer non-cigarette tobacco products were more likely to engage, but only after multiple prompts versus a single prompt. Engagement was positively associated with lowering children's susceptibility to using tobacco at follow-up. A pediatric AAC model holds promise in deterring youth tobacco use, including among historically marginalized populations who may require additional support.

By implementing a multilevel Ask, Advise, and Connect intervention, pediatric tobacco use declined in a clinical population, with high intervention engagement and improved outcomes.

Preliminary effects of a rural skin cancer prevention intervention for youths.

OBJECTIVES: To pilot and assess the feasibility, acceptability, and preliminary effects of the Rural Adult and Youth Sun (RAYS) protection program, a multilevel skin cancer preventive intervention for young children living in rural U.S. communities, delivered through community-organized team sports. METHOD: Three rural counties in Utah participated with two receiving the intervention and the third serving as a control. Youth sports leagues were recruited through recreation departments and the study took place from May through October 2021. Intervention leagues received sun protection supplies for players and coaches, educational materials for parents, and coaches were offered training on skin cancer and sun protection behaviors. RESULTS: The RAYS program is both feasible to deliver and acceptable to coaches, parents, and players. The intervention also demonstrates beneficial preliminary effects on components of observed child sun-protective behaviors, coach sun protection behaviors, knowledge of skin cancer prevention recommendations, and self-efficacy in skin cancer prevention. CONCLUSIONS: Multilevel interventions for skin cancer prevention among young children can be successfully delivered through community organizations and their settings. A priority moving forward is the identification of ways to optimize delivery of such programs to positively influence skin cancer preventive behaviors among children living in diverse rural areas. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

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.

Parent Quality of Life After Disclosure of Pediatric Oncology Germline Sequencing Results.

PURPOSE: To characterize parents' quality of life (QoL) after germline genomic sequencing for their children with cancer. METHODS: Participants were n = 104 parents of children with cancer enrolled in a prospective study of clinical tumor and germline genomic sequencing. Parents completed surveys at study consent (T0), before disclosure of their child's germline results (T1), and again ≥5 weeks after results disclosure (T2). Bivariate associations with QoL were examined, followed by a multivariable regression model predicting parents' psychological distress. RESULTS: At T2, parental distress significantly differed by their children's germline result type (positive, uncertain, negative; P = .038), parent relationship status (P = .04), predisclosure genetics knowledge (P = .006), and predisclosure worry about sequencing (P < .001). Specifically, parents of children with positive (ie, pathogenic or likely pathogenic) results experienced greater distress than those of children with negative results (P = .029), as did parents who were single, more knowledgeable about genetics, and with greater worry. In the adjusted regression model, a positive germline result remained significantly associated with parents' lower QoL at T2 follow-up (F [4,92] = 9.95; P < .001; R2 = .30; ß = .19; P = .031). CONCLUSION: Germline genomic sequencing for children with cancer is associated with distress among parents when revealing an underlying cancer predisposition among their affected children. Genetic education and counseling before and after germline sequencing may help attenuate this impact on QoL by addressing parents' concerns about test results and their health implications. Assessing parents' worry early in the testing process may also aid in identifying those most likely in need of psychosocial support.

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.

Results of a randomized controlled trial of a decision support intervention for disclosing maternal BRCA genetic test results to children and adolescents.

Objective: Evaluate the impact of a targeted family communication intervention for mothers undergoing genetic counseling and testing (GCT) for BRCA gene alterations. Methods: Following BRCA GCT, mothers (N = 204; M age = 45 y) were randomized to either a control condition (self-help print materials) or intervention (printed decision support guide, based on behavioral decision making theory in health care) for supporting choices about disclosing maternal genetic test results to children and adolescents. Behavioral assessments were administered prior to maternal GCT and after receipt of results: primary outcomes were maternal disclosure to children and parent-child communication quality. Results: Mothers in the intervention were > 2x likely to disclose their BRCA test results to their children compared to those in the control condition (odds ratio [OR] = 2.33, 95% confidence interval [CI] = 1.06, 5.10; p = .04). This effect was moderated by children's ages: mothers of preteens (<13 y) assigned to the intervention were >3x likely to disclose their results (OR = 3.74, 95% CI = 1.49, 9.41; p = .005). In adjusted models, intervention was also associated with favorable changes in the quality of parent-child communication (95% CI = 0.30, 9.00; p < .05). Conclusion: Decision support improves parent-child communication outcomes about GCT for hereditary breast-ovarian cancer. Innovation: This trial is among the first to empirically evaluate the outcomes of a behavioral intervention to support family communication of maternal BRCA risk information to children.

Measuring high-risk parents' opinions about direct-to-consumer genetic testing for adult-onset inherited cancer syndromes in their adolescent and young adult children.

Neither direct-to-consumer (DTC) genetic testing nor predictive genetic testing for adult-onset conditions is recommended for minor children due to ethical concerns and low clinical utility. However, parents with pathogenic variants (PVs) in disease-causing genes may be interested in pursuing genetic testing that includes the familial PV for their children. The Pediatric Testing Attitudes Scale (P-TAS) was previously developed to examine high-risk parents' opinions about pediatric BRCA genetic testing for adult-onset breast/ovarian cancer. Here, the psychometric properties of the P-TAS were examined in a new sample of N = 126 parents (M age = 47.2 years) with PVs in a more complete set of cancer risk genes represented on DTC panel tests. The mean score on the P-TAS was 44 out of a maximum score of 60, indicating that a majority of parents generally held favorable opinions about testing their children for adult-onset inherited cancer syndromes. The internal consistency of the full scale was high (α = 0.91). A factor analysis identified two-component scales, labeled Attitudes and Beliefs (α = 0.93) and Decision Making and Communication (α = 0.83). In a multivariable regression model, P-TAS co-factors accounted for 34% of variance in parental opinions, including the frequency of prior family communication about cancer and the likelihood of utilizing DTC genetic testing with children (R2  = 0.34, p < 0.001). Results suggest that the P-TAS remains a reliable measure to assess high-risk parents' opinions about pediatric DTC genetic testing for adult-onset conditions, with promising validity. Applications of the P-TAS include informing genetic counseling practice, pediatric medical care, and policy guidelines surrounding DTC genetic testing.

Long-Term Adaptation Among Adolescent and Young Adult Children to Familial Cancer Risk.

BACKGROUND: It is important to examine adolescent and young adult (AYA) children's long-term psychosocial and behavioral adaptation to disclosure of maternal BRCA-positive carrier status (BRCA+) to inform approaches for familial cancer risk communication, education, and counseling. METHODS: Mothers underwent BRCA genetic testing 1 to 5 years earlier. Group differences in AYAs' self-reported outcomes were analyzed by maternal health and carrier status, and child age and sex. RESULTS: A total of N = 272 AYAs were enrolled: 76.1% of their mothers were breast or ovarian cancer survivors and 17.3% were BRCA+. AYAs' cancer risk behavior (tobacco and alcohol use, physical activity) and psychologic distress levels did not vary by maternal status. In bivariate analyses, AYAs of cancer-surviving mothers believed themselves to be at greater risk for, and were more knowledgeable about, cancer than AYAs of mothers without cancer. AYAs of BRCA+ mothers were more concerned about cancer, held stronger beliefs about genetic risk, and placed a higher value on learning about genetics. In adjusted models, maternal cancer history (not BRCA+) remained associated with AYAs' greater perceptions of cancer risk (P = .002), and knowledge about cancer (P = .03) and its causes (P = .002). CONCLUSIONS: Disclosing maternal BRCA+ status did not influence children's lifestyle behavior or adversely affect quality of life long term. AYAs of BRCA+ mothers were more aware of and interested in genetic risk information. Such families may benefit from support to promote open communication about genetic testing choices.

Factors Associated With Disordered Eating Behavior Among Adolescent Girls: Screening and Education.

INTRODUCTION/OBJECTIVES: An unhealthy relationship with food can lead to disordered eating in adolescence, highlighting the importance of screening. This study describes the frequency of disordered eating behavior among female adolescents, as well as associated characteristics and health behaviors. METHODS: Data are from a multidimensional risk factor screening survey administered at a university medical center's adolescent clinic from 2016 to 2018. The instrument was adapted from existing screening tools such as the Rapid Assessment for Adolescent Preventive Services (RAAPS), the American Medical Association's Guidelines for Adolescent Preventive Services (GAPS), and the Youth Risk Behavior Survey (YRBS). Analysis was limited to self-reported responses provided by females aged 10 to 21 years (N = 915). Statistical analyses included chi-square tests and independent sample T-tests. RESULTS: Of the N = 915 females who reported on disordered eating behavior, n = 57 (6.2%) had engaged in some form of disordered eating behavior within the past 12 months. Disordered eating was significantly associated (P < .001) with not consistently wearing a helmet while biking, having tried e-cigarettes, being bullied in the past 30 days, having an adverse childhood experience (ACE), and being African American (P = .005). Subgroup analysis of the relationship between disordered eating and bullying, by race, yielded significant findings: disordered eating was more highly associated with being bullied in the past 30 days among African American females (P = .038). The relationship between disordered eating and ACE was also significant (P < .001) among Caucasian girls when stratified by race. CONCLUSIONS: Adolescent risk behaviors often co-occur, and disordered eating behavior may be differentially observed by race. Findings highlight the importance of education and screening to prevent the development of disordered eating, and identify those who may be struggling. These results can be useful to community health education and in healthcare to develop and implement health promotion and eating disorder prevention strategies. Further studies are needed to assess additional factors that promote or protect against disordered eating to improve prevention.

Improving our model of cascade testing for hereditary cancer risk by leveraging patient peer support: a concept report.

Consensus and evidence suggest that cascade testing is critical to achieve the promise of cancer genetic testing. However, barriers to cascade testing include effective family communication of genetic risk information and family members' ability to cope with genetic risk. These barriers are further complicated by the developmental needs of unaffected family members during critical windows for family communication and adaptation. Peer support could address these barriers. We provide two illustrative examples of ongoing BRCA1/2-related clinical trials that apply a peer support model to improve family communication and functioning. Peer support can augment currently available genetic services to facilitate adjustment to and effective use of cancer genetic risk information. Importantly, this scalable approach can address the presence of cancer risk within families across multiple developmental stages. This applies a family-centered perspective that accommodates all potentially at-risk relatives. This peer support model can be further applied to emerging topics in clinical genetics to expand reach and impact.

Tailored Mobile Messaging Intervention for Waterpipe Tobacco Cessation in Young Adults: A Randomized Trial.

Objectives. To test a tailored mobile health (i.e., mHealth) intervention for waterpipe tobacco cessation in young adults. Methods. From 2018 to 2020 at 2 US sites, we conducted a randomized trial with 349 waterpipe tobacco smokers aged 18 to 30 years randomized to control (no intervention), untailored, or tailored intervention arms. Intervention arms received a 6-week mHealth intervention conveying risks of waterpipe tobacco through text and images and strategies to enhance motivation and support quitting. The tailored intervention was personalized to baseline measures and intervention text message responses. Risk appraisals, motivation to quit, waterpipe smoking frequency, and cessation were assessed at 6 weeks, 3 months, and 6 months. Results. At 6 months, cessation was higher in the tailored (49%) than the control arm (29%; odds ratio = 2.4; 95% confidence interval = 1.3, 4.2) and smoking frequency was lower in the tailored (mean = 3.5 days) than the control arm (mean = 4.3 days; P = .006). At interim follow-ups, significant differences in other outcomes favored the tailored intervention. Conclusions. Tailored mobile messaging can help young adult waterpipe tobacco smokers quit. This scalable intervention is poised for population implementation.

Multiple approaches to enhancing cancer communication in the next decade: translating research into practice and policy.

Communicating risk and other health information in a clear, understandable, and actionable manner is critical for the prevention and control of cancer, as well as the care of affected individuals and their family members. However, the swift pace of development in communication technologies has dramatically changed the health communication landscape. This digital era presents new opportunities and challenges for cancer communication research and its impact on practice and policy. In this article, we examine the science of health communication focused on cancer and highlight important areas of research for the coming decade. Specifically, we discuss three domains in which cancer communication may occur: (a) among patients and their healthcare providers; (b) within and among families and social networks; and (c) across communities, populations, and the public more broadly. We underscore findings from the prior decade of cancer communication research, provide illustrative examples of future directions for cancer communication science, and conclude with considerations for diverse populations. Health informatics studies will be necessary to fully understand the growing and complex communication settings related to cancer: such works have the potential to change the face of information exchanges about cancer and elevate our collective discourse about this area as newer clinical and public health priorities emerge. Researchers from a wide array of specialties are interested in examining and improving cancer communication. These interdisciplinary perspectives can rapidly advance and help translate findings of cancer communication in the field of behavioral medicine.

Effects of pictorial warning label message framing and standardized packaging on cigarette packaging appeal among young adult smokers.

INTRODUCTION: Pictorial warning labels and standardized "plain" packaging are policy interventions to reduce smoking, in part, by making cigarette packs and smoking less appealing. To inform potential policy decisions, this study examined the relative effects of message text framing (gain vs. loss) and cigarette packaging (standardized vs. branded) on appeal in a sample of young adult cigarette smokers. METHODS: Cigarette smokers (N = 339) ages 18-30 completed two within-subjects experimental tasks. Tasks assessed the effects of message text framing (gain vs. loss) and packaging (standardized vs. branded) on cigarette packaging appeal. Task 1 was a 2 × 2 discrete choice experiment, where participants chose between each experimental pack and a standard branded cigarette pack without a pictorial warning label. Task 2 was a ranking task where participants ranked all packs on measures of appeal. RESULTS: In Task 1, there were no significant differences in measures of appeal between packs displaying gain- vs. loss-framed message text, but all packs with pictorial warning labels significantly decreased appeal relative to standard branded packs without pictorial warning labels. Standardized packs with pictorial warning labels significantly reduced appeal relative to branded packs with pictorial warning labels and standard branded packs without pictorial warning labels. Task 2 pack rankings showed similar effects of pictorial warning labels and standardized packaging on appeal. CONCLUSIONS: Pictorial warning labels with gain- and loss-framed text were equally powerful at reducing appeal of cigarette packs in young adult smokers relative to branded packs without pictorial warning labels, especially when combined with standardized packaging.

Can Social Media Be Used as a Community-Building and Support Tool among Jewish Women Impacted by Breast and Ovarian Cancer? An Evidence-Based Observational Report.

About 1 in 40 Ashkenazi Jewish women carry a deleterious mutation in BRCA1/2 genes, predisposing them to hereditary breast/ovarian cancer (HBOC). Thus, efforts to prevent and control HBOC in the US must include sufficient outreach and education campaigns within and across the Jewish community. Social media (SM) is utilized in public health campaigns focused on cancer, but very little is known about the efficacy of those efforts when directed toward Jewish women at risk for ("previvors") and affected by ("survivors") HBOC. Here, we report on outcomes of a targeted SM campaign for this population, as led by a national not-for-profit HBOC advocacy organization. Mixed-methods data were obtained from n = 393 members of the community, including n = 20 key informants, and analyzed for engagement and satisfaction with its SM campaign and HBOC resources. Message recipients identified the SM campaign as helpful/meaningful (82%), of 'newsworthy' value (78%), and actionable/navigable (71%): interviews revealed that women were more likely to engage with SM if/when it featured stories relevant to their personal cancer experiences. SM is a valuable public health education tool to address the comprehensive cancer control and prevention needs of those previving and surviving with HBOC, including high-risk Jewish women.

Campus tobacco control policies and cessation interventions in college students: a commentary calling for research and action to address tobacco-related health disparities.

Tobacco-related health disparities (TRHDs) have a significant impact on population health in the USA. Effectively preventing and controlling TRHDs among young adult populations require multiple prevention and cessation points, including within college/university contexts. This commentary addresses current campus tobacco control policies and cessation interventions for U.S. college students, with an emphasis on TRHDs and opportunities for research and research translation to reduce these disparities. This commentary is informed by literature published between 2010 and 2020 regarding (a) prevalence and impact of campus tobacco control policies; and/or (b) behavioral outcomes from cessation interventions for young adults attending colleges. Despite a doubling of college campuses adopting tobacco-free policies from 2012 to 2017, roughly two-thirds continue to operate without such policies. Few policies address alternative tobacco products (e.g., e-cigarettes, cigars/cigarillos, and hookah), and communication about and enforcement of existing policies is extremely limited. A broad range of cessation intervention strategies have targeted individuals in this age group, but with little focus on TRHDs and limited intervention dissemination. Importantly, college students representing populations at risk for TRHDs (e.g., racial/ethnic/sexual/gender minorities, low socioeconomic status) are less likely to be exposed to strong tobacco control policies or supports for cessation. There are untapped opportunities for behavioral medicine approaches to reduce TRHDs in college settings. Research findings regarding multilevel (policy, community-level, and individual-level) interventions must be translated to policy/practice in order to address tobacco use, particularly among vulnerable college student populations.