RESUMO
This study aimed to understand long-term coping responses of mothers (N = 287) receiving genetic counseling and testing (GCT) for hereditary breast/ovarian cancer (HBOC) syndrome. Psychological characteristics, including cancer-specific distress (Impact of Events Scale-Revised, α = .85) and coping (Brief COPE, α = .93) were assessed via structured personal communication, along with epidemiologic items assessing personal and family history of cancer. Genetic risk was determined by BRCA1/2 carriage. A principal component analysis was conducted on the coping measure to reduce its summary score to active coping (α = .91) with nine approach-oriented strategies responsive to stress. A multivariable regression model examined the main and interacting effects of clinical and psychological characteristics on maternal coping. Personal cancer history (F = 4.99, df = 1, p = .026), BRCA test result (F = 22.20, df = 1, p < .001), and cancer-specific distress (F = 17.80, df = 1, p < .001) were associated with greater engagement in active coping strategies. When controlling for cancer-specific distress, the interaction between personal cancer history and genetic test results was significant, such that women previously unaffected by cancer who received positive BRCA results reported the greatest levels of active coping (F = 7.92, p < .001). These findings indicate that previous cancer history, genetic risk, and psychological distress independently and jointly impact how women adapt to the threat of cancer over time.
RESUMO
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.
RESUMO
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.
Assuntos
Neoplasias da Mama , Síndromes Neoplásicas Hereditárias , Feminino , Adulto Jovem , Humanos , Criança , Adolescente , Pessoa de Meia-Idade , Filhos Adultos , Testes Genéticos , Atitude , Aconselhamento Genético/psicologia , Neoplasias da Mama/genética , Síndromes Neoplásicas Hereditárias/diagnóstico , Síndromes Neoplásicas Hereditárias/genética , Pais/psicologiaRESUMO
Background: Community-based organizations (CBO) offer support, including patient navigation (PN), to women at-risk for (e.g., those with BRCA pathogenic variants) and surviving with breast cancer. However, the impacts of CBO efforts on survivors' empowerment (e.g., control, self-confidence, knowledge/skills, coping) are largely unknown. Methods: As part of a quality improvement initiative (N=2,247) focused on PN, care satisfaction, peer support, and quality of life (QoL), we conducted a secondary analysis of a CBO care delivery model on women's empowerment. Results: Under CBO-led cancer control, empowerment was high: most survivors felt confident in (71.2%) and knowledgeable about (66.4%) managing their care. Perceived care quality was also high (91%): it was recommendable to others (93.9%), helpful (92.7%), informative (92.6%), timely (92.2%), reliable (91.5%), supportive (91.3%), and effective (88.7%). Regarding CBO care satisfaction, survivors felt supported by abundant resources (92.8%) and programs (91.2%), understood (92.0%), and helped (91.6%). Peer support (offered to >25%) demonstrated high engagement (>85%). Regarding QoL, 25.3% were in fair/poor health and 25.6% endorsed frequent mental distress (M=7.2 physically unhealthy days, M=7.8 mentally unhealthy days, and M=6.4 activity-limited days within the past month). Disparities in empowerment were observed as a function of survivors' QoL: lowest among those with more frequent mental distress (t=-2.13, p<.05), mentally unhealthy days (r=-.083, p<.05), and activity-limited days (r=-.058, p<.05)). These burdens may have influenced survivors' feelings of empowerment, especially among those without peer support (t=3.77, p<.001), who downgraded the quality of PN (t=.60, p<.01), and were least satisfied with CBO cancer control (t=.57, p<.01). In a multivariable model adjusting for mental distress, both perceived PN quality (B=.16, SE=.01, p<.001) and peer support (B=.24, SE=.13, p=.05) were positively associated with empowerment: survivors who rated their PN higher, and offered peer support, felt more empowered. Conclusions: CBO cancer control can uplift most survivors: addressing socially determined disparities, through programs such as peer support, may enhance their effectiveness and particularly among those with poor mental health.
RESUMO
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.
Assuntos
Abandono do Hábito de Fumar , Controle do Tabagismo , Tabagismo , Adolescente , Criança , Feminino , Humanos , Masculino , Aconselhamento , Atenção Primária à Saúde , Abandono do Hábito de Fumar/psicologia , Tabagismo/prevenção & controleRESUMO
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.