Kristi D. Graves, Ph.D. - US grants

DESCRIPTION (provided by applicant): The purpose of this career development application is to provide a mentored training and research experience to become an independent cancer control investigator with a focus on genomic medicine and cancer risk. Genomic information and personalized genetic medicine are expected to significantly impact disease prevention and control in the future. Existing behavioral research on genetic susceptibility to cancer focuses primarily on relatively rare, highly penetrant genetic mutations;however, single nucleotide polymorphisms (SNPs), also called low-penetrance genes, account for about 90% of all genetic variation. SNP testing typifies personalized genetic medicine and, with continued scientific advancements exploring gene-gene and gene-environment interactions, SNP testing may be able to provide probabilistic information about individual risk for certain diseases, including cancer. Given the accelerating pace of research and the rapid commercialization of genomic medicine, many questions need to be answered about potential interest in, delivery of, and impact of personalized genetic information. Traditional genetic counseling involves individual in-depth counseling and is not a viable model for conveying personalized genetic information on a broad scale. In anticipation of the increasing availability and use of SNP testing, we propose to 1) investigate individuals'knowledge of, attitudes toward, and interest in cancer SNP testing and 2) develop an approach to promote informed choice about SNP testing. Phase I will elicit primary care patients'knowledge, attitudes, and interest in cancer SNP testing through focus groups and then apply this qualitative information to the development, administration, and analysis of a scenario-based quantitative survey about cancer SNP testing. Using data from Project I, the Informed Choice Model, and our prior experience, Phase II focuses on development of patient education materials and a randomized trial to compare print informational materials to print informational materials plus decision support materials on the cognitive, affective, and attitudinal components of informed choice. We aim to better understand who is interested in cancer SNP testing, what information is important to convey to promote informed choice for SNP testing, and how to best deliver information about cancer SNP testing. The proposed research is supported by a training plan that involves interactions with multidisciplinary colleagues and formal coursework in cancer genetics, epidemiology, public health, biostatistics, and bioethics. Relevance: The purpose of the proposed research is to understand what people know and think about cancer risk due to genetic changes that are common in the population. We will ask people about their interest in and concerns about testing for personalized genetic information. We will also develop and evaluate different education approaches to help people make informed choices about tests for personalized genetic information so that these choices fit with their attitudes.

? DESCRIPTION (provided by applicant): Thyroid cancer is the most rapidly increasing cancer in the United States, with an annual percentage increase of 4.5% in women and 5.3% in men. High-risk thyroid cancer can be effectively treated by radioactive iodine, which leads to improved survival and decreased recurrence rates. The successful treatment of thyroid cancer has lead to an ever-increasing number of thyroid cancer survivors, many of whom are young. However, in addition to destroying thyroid cancer, radioactive iodine also damages salivary tissue, causing discomfort and swelling, recurrent salivary infections, decreased ability to taste, difficulty chewing dry foods, salivary gland stones, and increased dental caries. These side effects negatively impact quality of life. Despite recognition of salivary symptoms, risk factors and correlation with salivary function are less understood and represent knowledge gaps. Recently, additional craniofacial consequences of RAI treatment have been recognized. Lacrimal symptoms include dry eyes, over-flowing tears, and conjunctivitis. Nasal symptoms include nasal irritation, dry nose, and nose bleeds. The true incidence and consequences of lacrimal and nasal damage are unknown. Measurement of the range and impact of craniofacial side effects is essential before we can develop techniques to minimize RAI-related morbidity. We will develop and evaluate a patient-reported questionnaire of salivary, lacrimal and nasal symptoms in patients with differentiated thyroid cancer who are treated with radioactive iodine. We will use a mixed methods approach to develop the questionnaire (called SALANS) through two linked phases of research. In Phase I, we will conduct focus groups with 48 patients with thyroid cancer treated with radioactive iodine to identify the craniofacial symptoms and understand how these symptoms impact patients' quality of life. Following qualitative analyses and expert review of items, we will conduct cognitive testing of the newly designed SALANS questionnaire in 16 patients. After revision, we will conduct a pilot test of the SALANS questionnaire with a group of 80 patients with thyroid cancer (n=50 treated with radioactive iodine; n=30 not treated with radioactive iodine) to establish dimensionality and construct and discriminant validity. In Phase II, we will conduct a prospective cohort study with 50 patients newly diagnosed with differentiated thyroid cancer who will receive radioactive iodine treatment. We will conduct assessments prior to and then 7-days and 3, 6, 9 and 12 months post radioactive iodine therapy. We will correlate SALANS scores with objective measures of salivary function using salivary flow, performing salivary scintigraphy, and measurement of serum salivary amylase. The long-term goal of this research is to provide a valid and reliable questionnaire that can serve as the underpinning for future studies to prevent or ameliorate craniofacial damage in patients receiving radioactive iodine therapy.

ARBOLES Project Abstract/Summary Disparities in counseling and testing (genetic services) among Latinas and Hispanics at increased risk of hereditary breast and ovarian cancer (HBOC) result in less awareness of high lifetime cancer risks and thus increased risk of mortality due to a lack of appropriate risk management. Disparate uptake of genetic services in Latinas and Hispanics (hereafter ?Latinas?) includes limited awareness of referral to and access to services, as well as socioeconomic, language, and cultural barriers. Alternate models to facilitate risk appropriate referrals to and navigation through genetic services are urgently needed. In other cancer education contexts, community outreach and education professionals (hereafter, CORE-P), such as community health educators, promotoras, lay health advisors and patient navigators, have been effective in improving cancer screening behaviors in underserved populations. Increased screening and risk assessments can help reduce disparities in cancer incidence and mortality. Guided by core competencies from the Centers for Disease Control and Prevention and other national coalitions, we seek to educate bilingual Spanish-English speaking CORE-P to increase basic knowledge about: the role of genetics in disease, the limitations of their own genetic expertise, and how to make appropriate referrals for at-risk individuals to health care professionals with more genetic expertise, called ?referral-level competence.? Limited research has used CORE-P to increase Latinas? awareness and uptake of genetics services through education and support. Guided by principles of Adult Learning Theory and popular education techniques, we propose the Family Tree Program [Programa de ARBOLES Familiares: Assessing Risk of Breast Cancer through Outreach to Latinas with Education and Support] for bilingual CORE-P. The goal of the training program is to address the unmet referral-level competence needs by developing a trained network of CORE-P to ensure risk appropriate uptake of genetic services among Latinas at risk for HBOC. Specifically, we aim to: (1) refine and finalize an education curriculum for bilingual community outreach and education professionals (CORE-P), (2) implement the ARBOLES Familiares program among 250 bilingual CORE-P using an in-person workshop followed by online modules, and (3) identify the impact of the ARBOLES Familiares program on participants? knowledge, self-efficacy, skills, and the resulting community impact among high- risk Latinas.