Bilingual Cancer Genetic Education Modules for the Deaf Community: Development and Evaluation of the Online Video Material.

Health information about inherited forms of cancer and the role of family history in cancer risk for the American Sign Language (ASL) Deaf community, a linguistic and cultural community, needs improvement. Cancer genetic education materials available in English print format are not accessible for many sign language users because English is not their native or primary language. Per Center for Disease Control and Prevention recommendations, the level of literacy for printed health education materials should not be higher than 6th grade level (~ 11 to 12 years old), and even with this recommendation, printed materials are still not accessible to sign language users or other nonnative English speakers. Genetic counseling is becoming an integral part of healthcare, but often ASL users are not considered when health education materials are developed. As a result, there are few genetic counseling materials available in ASL. Online tools such as video and closed captioning offer opportunities for educators and genetic counselors to provide digital access to genetic information in ASL to the Deaf community. The Deaf Genetics Project team used a bilingual approach to develop a 37-min interactive Cancer Genetics Education Module (CGEM) video in ASL with closed captions and quizzes, and demonstrated that this approach resulted in greater cancer genetic knowledge and increased intentions to obtain counseling or testing, compared to standard English text information (Palmer et al., Disability and Health Journal, 10(1):23-32, 2017). Though visually enhanced educational materials have been developed for sign language users with multimodal/lingual approach, little is known about design features that can accommodate a diverse audience of sign language users so the material is engaging to a wide audience. The main objectives of this paper are to describe the development of the CGEM and to determine if viewer demographic characteristics are associated with two measurable aspects of CGEM viewing behavior: (1) length of time spent viewing and (2) number of pause, play, and seek events. These objectives are important to address, especially for Deaf individuals because the amount of simultaneous content (video, print) requires cross-modal cognitive processing of visual and textual materials. The use of technology and presentational strategies is needed that enhance and not interfere with health learning in this population.

Comparison of Telephone and Televideo Modes for Delivery of Genetic Counseling: a Randomized Trial.

Telephone and televideo have yielded equivalent patient satisfaction and psychosocial outcomes when compared to in-person genetic counseling, yet little is known about how they compare to one another. In this randomized controlled trial, veterans received genetic counseling via telephone or traveled to a clinic to participate via encrypted televideo. Knowledge and visit satisfaction were assessed 2 weeks later. Travel time, mileage, and out-of-pocket costs were calculated for videoconferencing. Qualitative interviews were conducted with patients and counselors to assess acceptability. Of the 20 male patients randomized to telephone, 90% received counseling and provided outcomes; of the 18 randomized to televideo, 67% received counseling and 50% provided outcomes. Telephone patients answered a mean of 4.4 of eight questions correctly at baseline and 4.7 at follow-up; televideo means were 5.6 and 6.5, respectively. Satisfaction was 25.2 out of 30 for telephone and 26.9 for televideo. Televideo patients incurred a median of 2.8 h of travel time, 40 roundtrip miles, and $67.29 in costs. Patients and counselors found both modes acceptable for providing education and answering questions. Although patients liked the flexibility of telephone, counselors felt patients missed more appointments and were distracted when using telephone. A noted advantage of videoconferencing was reading body language. Further evaluation of alternative delivery modes is needed.

Perceptions of tissue storage in a dementia population among spouses and offspring.

Cognitively impaired patients with dementia often rely on health advocates or guardians, such as spouses or adult offspring, to consent for medical procedures. These family members may also decide whether an autopsy is performed after death or whether their family member donates tissues. However, spouses are not genetically related to the patient and may have different perspectives than genetically related family members when making medical decisions with genetic implications, such as participation in a tissue repository (biobank). Interviews were conducted with spouses and adult offspring of individuals with a progressive dementing disease. Both spouses and offspring were supportive of the patient with dementia to participate in tissue storage. The top perceived benefits of tissue storage in both offspring and spouses were future value for family members and advancement of medical knowledge. Concerns included misuse of the tissue and insurance discrimination. Although the personal genetic implications differ between spouses and offspring, they share similar attitudes about the importance of tissue banking for the individual with a dementing disease.

Training the Millennial learner through experiential evolutionary scaffolding: implications for clinical supervision in graduate education programs.

They are the Millennials--Generation Y. Over the next few decades, they will be entering genetic counseling graduate training programs and the workforce. As a group, they are unlike previous youth generations in many ways, including the way they learn. Therefore, genetic counselors who teach and supervise need to understand the Millennials and explore new ways of teaching to ensure that the next cohort of genetic counselors has both skills and knowledge to represent our profession well. This paper will summarize the distinguishing traits of the Millennial generation as well as authentic learning and evolutionary scaffolding theories of learning that can enhance teaching and supervision. We will then use specific aspects of case preparation during clinical rotations to demonstrate how incorporating authentic learning theory into evolutionary scaffolding results in experiential evolutionary scaffolding, a method that potentially offers a more effective approach when teaching Millennials. We conclude with suggestions for future research.

Pancreatic cancer surveillance among high-risk populations: knowledge and intent.

Pancreatic cancer is the fourth most common cancer in both men and women in the United States. It has the lowest survival rate of all cancers, largely due to the presence of non-specific symptoms, leading to diagnosis at advanced stages. While the majority of cases of pancreatic cancer are sporadic, up to 10% may be associated with an inherited predisposition. Currently, there is no standard screening protocol for pancreatic cancer, although this will change in the future as technology improves. Additionally, there is little information regarding the perceptions and intent to screen for pancreatic cancer among those with an increased risk due to a hereditary cancer predisposition syndrome, which was the objective of this study. Focus groups and individual telephone interviews were conducted, with questions focused on knowledge about pancreatic cancer and screening, perceived motivators, and perceived barriers related to each of the screening techniques currently available. Participants were recruited from the High Risk Breast Cancer and Pancreatic Cancer Registries at Huntsman Cancer Institute. The findings of this study indicated that individuals from these high-risk groups have low knowledge levels of pancreatic cancer screening, despite their desire for this information. Motivation to undergo a particular screening technique is related to whether the test is recommended by a physician, cost, degree of invasiveness, and comfort level. This information is useful to genetics professionals who counsel at-risk individuals, physicians who formulate patient care plans, and translational researchers who are developing pancreatic screening methods.

BRCA testing within the Department of Veterans Affairs: concordance with clinical practice guidelines.

Guideline-concordant cancer care is a priority within the Department of Veterans Affairs (VA). In 2009, the VA expanded its capacity to treat breast cancer patients within VA medical centers (VAMCs). We sought to determine whether male and female Veterans diagnosed with breast cancer received BRCA testing as recommended by the National Comprehensive Cancer Network (NCCN) guidelines on Genetic/Familial High-Risk Assessment in Breast and Ovarian Cancer (v. 1.2010-1.2012). Using the 2011-2012 VA Central Cancer Registry and BRCA test orders from Myriad Genetics, we conducted a retrospective study. The outcome variable was a recommendation for genetic counseling or BRCA testing, determined by chart review. Independent variables expected to predict testing included region, site of care, and patient characteristics. We performed descriptive analysis of all patients and conducted multivariable logistic regression on patients who sought care at VAMCs that offered BRCA testing. Of the 462 Veterans who met NCCN testing criteria, 126 (27 %) received guideline-concordant care, either a referral for counseling or actual testing. No BRCA testing was recommended in 49 (50 %) VAMCs that provide cancer treatment. Surprisingly, patients with second primary breast cancer were less likely to be referred/tested (OR 0.39; CI 0.17, 0.89; p = 0.025). For patients under age 51, a yearly increase in age decreased likelihood of referral or testing (OR 0.85; CI 0.76, 0.94; p < 0.001). There were no differences in testing by race. In conclusion, there was significant underutilization and lack of access to BRCA testing for Veterans diagnosed with breast cancer. Our research suggests the need for clinical decision support tools to facilitate delivery of guideline-concordant cancer care and improve Veteran access to BRCA testing.

Bilingual approach to online cancer genetics education for Deaf American Sign Language users produces greater knowledge and confidence than English text only: A randomized study.

INTRODUCTION: Deaf American Sign Language-users (ASL) have limited access to cancer genetics information they can readily understand, increasing risk for health disparities. We compared effectiveness of online cancer genetics information presented using a bilingual approach (ASL with English closed captioning) and a monolingual approach (English text). HYPOTHESIS: Bilingual modality would increase cancer genetics knowledge and confidence to create a family tree; education would interact with modality. METHODS: We used a parallel 2:1 randomized pre-post study design stratified on education. 150 Deaf ASL-users ≥18 years old with computer and internet access participated online; 100 (70 high, 30 low education) and 50 (35 high, 15 low education) were randomized to the bilingual and monolingual modalities. Modalities provide virtually identical content on creating a family tree, using the family tree to identify inherited cancer risk factors, understanding how cancer predisposition can be inherited, and the role of genetic counseling and testing for prevention or treatment. 25 true/false items assessed knowledge; a Likert scale item assessed confidence. Data were collected within 2 weeks before and after viewing the information. RESULTS: Significant interaction of language modality, education, and change in knowledge scores was observed (p = .01). High education group increased knowledge regardless of modality (Bilingual: p < .001; d = .56; Monolingual: p < .001; d = 1.08). Low education group increased knowledge with bilingual (p < .001; d = .85), but not monolingual (p = .79; d = .08) modality. Bilingual modality yielded greater confidence creating a family tree (p = .03). CONCLUSIONS: Bilingual approach provides a better opportunity for lower educated Deaf ASL-users to access cancer genetics information than a monolingual approach.

Securing and Documenting Cancer Family History in the Age of the Electronic Medical Record.

Family health history is one of the least expensive, most useful, and most underused methods available to conduct assessments of the genetic aspect of a condition or to target the need for a genetic evaluation. This article introduces to the surgical oncologist the reason and process of collecting family history information. As medical records shift from paper to electronic formats, pedigree drawings are not readily available within the electronic health records. International efforts are underway to develop searchable, updatable, and interoperable formats that can collect family history information to inform clinical decision support for genetic risk assessment.

The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer.

INTRODUCTION: The etiology of familial breast cancer is complex and involves genetic and environmental factors such as hormonal and lifestyle factors. Understanding familial aggregation is a key to understanding the causes of breast cancer and to facilitating the development of effective prevention and therapy. To address urgent research questions and to expedite the translation of research results to the clinical setting, the National Cancer Institute (USA) supported in 1995 the establishment of a novel research infrastructure, the Breast Cancer Family Registry, a collaboration of six academic and research institutions and their medical affiliates in the USA, Canada, and Australia. METHODS: The sites have developed core family history and epidemiology questionnaires, data dictionaries, and common protocols for biospecimen collection and processing and pathology review. An Informatics Center has been established to collate, manage, and distribute core data. RESULTS: As of September 2003, 9116 population-based and 2834 clinic-based families have been enrolled, including 2346 families from minority populations. Epidemiology questionnaire data are available for 6779 affected probands (with a personal history of breast cancer), 4116 unaffected probands, and 16,526 relatives with or without a personal history of breast or ovarian cancer. The biospecimen repository contains blood or mouthwash samples for 6316 affected probands, 2966 unaffected probands, and 10,763 relatives, and tumor tissue samples for 4293 individuals. CONCLUSION: This resource is available to internal and external researchers for collaborative, interdisciplinary, and translational studies of the genetic epidemiology of breast cancer. Detailed information can be found at the URL http://www.cfr.epi.uci.edu/.

Successful use of peer educators for sharing genetic information.

This study examined the impact of a genetics education module provided by Reach to Recovery peer volunteers. Participants included 113 women with confirmed breast cancer diagnoses. Eighty-eight of these women (78%) completed a baseline survey, participated in a peer-led intervention, and completed a follow-up survey. Approximately half of the women received an education module that included a genetic component, while the other half did not. Results indicated that women who received the genetics module had greater increases in genetics knowledge than the group that did not receive the module. However, follow-up interest in genetic testing was not significantly different between the two groups. Results indicate that a peer-led genetics module can increase knowledge about genetics. However, it does not appear to have a differential effect on genetic testing interest.

Professional opportunities and responsibilities in the provision of genetic information to children relinquished for adoption.

We report a case involving the disclosure of BRCA1 mutation results to a woman who had placed a child for adoption 30 years prior to learning her mutation status. The disclosure of the mother's genetic test result to the son resulted in unexpected subsequent communications. This article briefly describes the experience and discusses the unique issues that arise in counseling a parent who has relinquished a child who is subsequently at risk to inherit a mutation for an adult onset genetic condition.