Piloting a Spanish-Language Web-Based Tool for Hereditary Cancer Genetic Testing.

The delivery of hereditary cancer pre-test education among Spanish-language patients is impeded by the dearth of Spanish-speaking genetic counselors. To address this gap, we evaluated a web-based genetic education tool delivered in Spanish to provide information typically discussed during an initial genetic counseling session. Spanish-speaking patients with a personal or family history of cancer were recruited at two centers in Puerto Rico and through social media. A total of 41 participants completed a survey before and after viewing the tool to measure knowledge, attitudes, and decisional empowerment. A subset of 10 participants completed a virtual semi-structured interview to assess the usability and appropriateness of the tool. Paired t-tests were calculated to evaluate changes in knowledge and attitudes. A McNemar test assessed for decisional empowerment. Interview transcripts were translated from Spanish to English and inductively coded and analyzed. Results revealed significant increases in knowledge (p < 0.001), while attitudes about genetic testing did not change (p = 0.77). The proportion of individuals who felt fully informed and empowered to decide about whether to undergo genetic testing increased from 15% to 51% (p < 0.001). Qualitative data indicated that participants found the tool easy to use with informative and valuable content. Our findings suggest this Spanish-language tool is a user-friendly and scalable solution to help inform and empower many individuals to decide about cancer genetic testing, recognizing that others may still benefit from genetic counseling prior to testing.

Inherited Cancer Knowledge Among Black Females with Breast Cancer Before and After Viewing a Web-Based Educational Video.

Purpose: Scalable solutions are needed to make pre-test genetic education about inherited cancer risk accessible across diverse and underserved populations. We evaluated an automated strategy to deliver genetic education through a web-based video among young Black females with breast cancer. Methods: 96 participants were recruited through state cancer registries in Florida and Tennesee. All participants viewed a 12 min video and completed a ten question quiz on inherited cancer knowledge before and after viewing the video. Median pre- and postvideo knowledge scores were categorized as <60% versus ≥60% and compared across demographic and clinical characteristics using binary logistic regression. Results: Of the 96 participants, mean age was 51, over 50% had income <$50 K, over 40% did not graduate college or have private insurance, and over 70% had previous genetic testing. Median knowledge scores significantly increased after viewing the video (p < 001), with no significant differences in those with or without prior testing. A higher post-video knowledge score was associated with an income ≥$50 K, a college degree, and private insurance (all p < .05). Conclusion: Among a population of young Black breast cancer patients, the educational video significantly increased knowledge. Findings support the use of automated pre-test educational tools as a scalable solution to make these services more accessible across populations.

Qualitative Methods for Refining a Web-Based Educational Tool for Patients Focused on Inherited Cancer Predisposition.

To address the increasing demand for inherited cancer genetic testing, we developed and evaluated a web-based educational tool to streamline genetic counseling (GC). Consented patients viewed the initial prototype containing core content (Version 1-Core) and provided feedback through three open-ended survey questions. Additional data were collected through individual interviews from a subgroup who viewed an enhanced version (Version 1-Enhanced), consisting of the same core content and additional optional content. Data were coded to synthesize most commonly repeated themes and conceptualize action items to guide refinement strategies. Of 305 participants, 80 responded to open-ended survey questions to suggest refinement strategies, after viewing Version 1-Core. Interviews with a subgroup of seven participants, who viewed Version 1-Enhanced, provided additional feedback. Of 11 unique action items identified, five overlapped across datasets (provide instructions, simplify language, improve visuals, embed knowledge questions with explanations, include more insurance-related information), three were identified only through open-ended survey data (incorporate automatic progression, clarify test result information, increase interactive content), and three were identified only through interviews (ensure core content is viewed, incorporate progress bar, feature embedded optional content at the end of the tool). Ten action items aligned with underlying tool objectives to provide an interactive online pre-test GC solution and were used to guide refinement strategies. Our results demonstrate the value of rigorous qualitative data collection and analysis in health research and the use of the self-directed learning framework and eHealth strategies to leverage technology in scaling up and innovating the delivery of pre-test GC for inherited cancer.

A Web-Based Tool to Automate Portions of Pretest Genetic Counseling for Inherited Cancer.

BACKGROUND: Increasing demand for genetic testing for inherited cancer risk coupled with a shortage of providers trained in genetics highlight the potential for automated tools embedded in the clinic process to meet this demand. We developed and tested a scalable, easy-to-use, 12-minute web-based educational tool that included standard pretest genetic counseling elements related to panel-based testing for multiple genes associated with cancer risk. METHODS: The tool was viewed by new patients at the Vanderbilt Hereditary Cancer Clinic before meeting with a board-certified genetics professional. Pre- and post-tool surveys measured knowledge, feeling informed/empowered to decide about testing, attitudinal values about genetic testing, and health literacy. Of the initial 100 participants, 50 were randomized to only have knowledge measured on the post-tool survey to assess for a priming effect. RESULTS: Of 360 patients approached, 305 consented and completed both the pre- and post-tool surveys, with a mean age of 47 years, including 80% female patients and 48% patients with cancer. Survey results showed an increase in knowledge and feeling informed/empowered after viewing the tool (P<.001), but no significant change in attitude (P=.64). Post-tool survey data indicated no difference in median knowledge between low and high health literacy groups (P=.30). No priming effect was present among the initial 100 participants (P=.675). CONCLUSIONS: Viewing the educational tool resulted in significant gains in knowledge across health literacy levels, and most individuals felt informed and empowered to decide about genetic testing. These findings indicate that the use of an automated pretest genetic counseling tool may help streamline the delivery of genetic services.

Breast cancer screening implications of risk modeling among female relatives of ATM and CHEK2 carriers.

BACKGROUND: With the increasing use of multigene panel tests, pathogenic and likely pathogenic (P/LP) variants are identified more frequently in the moderate-penetrance breast cancer genes ATM and CHEK2. Lifetime breast cancer risk among women with P/LP variants in these genes generally exceeds 20%, meeting the threshold at which high-risk breast cancer screening through breast magnetic resonance imaging (MRI) is recommended. METHODS: Among a registry-based sample of 56 ATM and 69 CHEK2 carriers, the authors sought to determine the percentage of relatives in whom a P/LP variant would impact breast cancer surveillance. Lifetime breast cancer risks for unaffected, female first-degree and second-degree relatives were estimated using the Breast and Ovarian Analysis of Disease Incidence and Carrier Estimation Algorithm (BOADICEA). RESULTS: Among first-degree relatives of ATM and CHEK2 carriers, only 22.6% and 14.9%, respectively, were found to have lifetime breast cancer risks of ≥20% based on family cancer history alone; however, when including the proband's P/LP variant in the model, these percentages increased significantly to 56.6% and 55.3%, respectively (P < .0001 and P < .0001, respectively). Similar increases in lifetime breast cancer risks were found among second-degree relatives. CONCLUSIONS: The results of the current study suggest that the majority of female first-degree and second-degree relatives of ATM and CHEK2 carriers do not qualify for breast MRI based on family cancer history alone. Therefore, testing for these genes, as well as awareness of positive moderate-penetrance breast cancer gene results in the family, may impact MRI eligibility. These findings highlight the potential usefulness of and need for breast cancer risk models that incorporate moderate-penetrance gene positivity to inform screening recommendations among at-risk family members.

Creencias de los escolares de educación primaria sobre los efectos del consumo de tabaco / Beliefs of primary school children about the effects of tobacco consumption

Resumen:

Introducción: el consumo de tabaco es considerado como un problema de salud pública, representa la segunda causa principal de muerte a nivel mundial. Se advierte una creciente tendencia en el inicio de consumo de tabaco a una edad cada vez más temprana.

Objetivo: describir las creencias de los escolares de sexto grado de educación primaria sobre los efectos del tabaco.

Metodología: estudio descriptivo en una muestra aleatoria de 155 estudiantes de sexto grado del total de escuelas primarias del municipio de San José de Gracia, Aguascalientes. Los datos se recabaron mediante un cuestionario autoadministrado para explorar las Creencias sobre los efectos del tabaco. Resultados: del total de estudiantes el 40 % refiere convivir en su hogar con fumadores, más de la mitad de los estudiantes (60.6 %) expresaron aspectos positivos respecto al tabaco, como que "fumar no quita el sueño". El 36.1 % y 31 % respectivamente, creen que "ayuda a las personas a distraerse de los problemas", y que "hace sentir bien a las personas". Es relevante que el 12.9 % de los estudiantes exprese que el consumo de tabaco no produce adicción y el 9 % crea que no es causa de cáncer. Conclusiones: los escolares comparten características personales, familiares, económicas, sociales y laborales, como la convivencia con fumadores activos en el hogar y en el trabajo, y tienen la creencia que el consumo del tabaco ayuda a las personas a distraerse de los problemas y que los hace sentir bien.

Abstract:

Introduction: Tobacco consumption is considered as a public health problem, is the second leading cause of death worldwide. A growing trend is seen in the first use of tobacco at an increasingly consumption at earlier ages.

Objective: To describe the beliefs of students of sixth grade of primary education on the effects of tobacco.

Methodology: Descriptive study in a random sample of 155 sixth grade students of all elementary schools in the municipality of San Jose de Gracia, Aguascalientes. Data were collected through a self-administered questionnaire to explore the "Beliefs about the effects of snuff." Results: The total number of students 40 % reported living at home with smokers, more than half of the students in 60.6 % expressed positive aspects about that "smoking is not related with losing sleep". In 36.1 % and 31 % respectively believe that "if it helps people to be distracted from the problems"; and "it makes people feel good." It is significant that 12.9 % of students expressed that consumption of snuff is not addictive and 9 % believe that it does not cause cancer. Conclusions: Students share personal characteristics, family, economic, social and labor, such as coexistence with active smokers at home and at work and have the belief that the consumption of tobacco helps people to get distracted from the problems and that it feels good.