Enhanced Genetic Awareness and Genetic Evaluation for Men Through Technology: The ENGAGEMENT Study
Abstract
Rationale: Genetic testing for prostate cancer (PCA) is revolutionizing PCA care. Genetic results can predict which men with advanced or lethal PCA respond to certain targeted therapies or treatment strategies. Furthermore, genetic information is now providing guidance regarding which men with earlier-stage PCA may have progression of their disease, thus becoming a key piece of information to make an informed decision regarding active surveillance. Genetic testing guidelines have significantly expanded to encompass testing of many thousands of men with PCA or at risk for the disease. This expansion of testing has ushered an era where providers not formally trained in genetics, such as oncologists and urologists, are increasingly offering PCA genetic testing in their practices with few opportunities for genetic counseling, causing concern for appropriate results interpretation, recommendations for precision therapy, and screening. Furthermore, companies are also offering direct-to-consumer genetic testing, often with inadequate genetic counseling or linkages to care. There are many considerations that patients, providers, and the population need to understand when engaging in genetic testing. Genetic testing for PCA now involves testing of several cancer genes linked with PCA and other cancers relevant to men and their male and female relatives, necessitating familiarity with treatment and screening guidelines. Genetic results can be complex to interpret, with critical PCA treatment and management decisions being affected. Furthermore, patients need to understand the financial implications of genetic testing regarding eligibility for life insurance and disability plans. Current practice gaps and areas of unmet need include: (1) lack of provider knowledge of genetic results interpretation and recommendations; (2) limited insight into men’s experience with genetic testing, particularly when obtained without the guidance of a genetics provider; and (3) low population awareness of PCA genetic testing. ENGAGEMENT (Enhanced Genetic Awareness and Genetic Evaluation for Men Through Technology) is the first study to leverage technology to address these current gaps in PCA genetic testing. Led by a transdisciplinary expert team, the study will (1) develop a novel virtual genetics board for providers engaged in PCA genetic testing to address knowledge and practice gaps by case-based learning; (2) leverage web-based registry capacity to uncover men’s experience with genetic testing to inform patient-centered practice; and (3) develop and assess the first PCA genetics podcast series to raise public awareness. Hypothesis: Technology-based approaches will address gaps in provider management, men’s experience, and population awareness regarding PCA genetic testing. Specific Aims: Aim 1 (Provider Focus). Informed by a mixed-methods approach, develop and implement a web-based virtual PCA genetics board across academic, community, and Department of Veterans Affairs (VA) settings for providers to discuss PCA genetics cases, precision treatment, and screening recommendations. Perceived usefulness, acceptability, self-efficacy for genetically based recommendations, and genetics knowledge from dynamic case-based learning will be assessed. Aim 2 (Patient Focus). Establish a web-based, national, patient-driven registry for any male who has undergone PCA genetic testing to assess men’s experience with the genetic evaluation process and inform patient-centered genetics practice and resource development. Aim 3 (Population Focus). Utilize digital media to share updated information on genetic testing and precision management of PCA through a public-facing podcast series. Contributions, Applicability, and Impact: The ENGAGEMENT Study will address a vital need for responsible genetic test implementation addressing critical gaps. The virtual genetics board, patient-driven registry, and podcast series will be publicized
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Mar 10, 2021
- Source ID
- W81XWH2010310
Entities
People
- Veda N Giri
Organizations
- Thomas Jefferson University
- United States Army