2014-2015 Alzheimer’s and Related Diseases Research Award*Evaluation of a Web-Based Decision Aid for People Considering a Genetic Testing for Alzheimer’s Risk
*The Virginia Center on Aging which administers the Alzheimer’s and Related Diseases Research Award Fund for the Commonwealth of Virginia, provides seed money to researchers in Virginia to stimulate innovative research into biomedical and psychosocial aspects of dementia, including cell biology, caregiving, and animal modeling.
Evaluation of a Web-Based Decision Aid for People Considering a Genetic Testing for Alzheimer’s Risk
Doris T. Zallen, PhD, Golde Holtzman, PhD, and Kye Kim, MD
The genetic revolution in medicine is making it possible for individuals to have genetic testing to determine their risk for diseases that can occur later in their lives. For example, the є4 form of the apolipoprotein-E (APOE) gene has been associated with an increased risk for late-onset Alzheimer’s disease. Decisions about genetic testing were originally made in consultation with genetic counselors. The tests are now widely offered in situations where there is little time or opportunity to provide counseling, e.g., through physicians’ offices and on the internet. Many people thus have genetic testing with inadequate information or preparedness. The investigators have developed an online decision-aid prototype designed for people considering APOE gene testing. The prototype is based on over 150 interviews, in which the factors that consumers regard as most important when deciding about genetic testing were identified. The decision aid includes a novel values-clarification component: dramatized vignettes that present the pros and cons of genetic testing. This study will rigorously test this decision aid. Survey methodologies will be used to determine its effectiveness in communicating relevant knowledge, improving understanding of risk, and eliciting the value components of genetic testing. The findings will be used to enhance the utility and robustness of the decision aid and make it available online to the wider community.
(Dr. Zallen may be contacted at 540/231-4216, firstname.lastname@example.org; Dr. Holtzman may be contacted at 540/239-2949, email@example.com; Dr.Kim may be contacted at 540/981-8025, KYKim@carilionclinic.org)
This team of investigators developed an online decision-aid prototype as an educational tool to help in making decisions about whether or not to use the APOE genetic test to estimate genetic risk for Alzheimer’s disease. This prototype was evaluated by over 1,200 participants in a two-part (before and after) survey-based study. Both the quantitative data (the responses to the survey questions) and qualitative data (additional written comments from the participants) reveal a high level of satisfaction with the tool as a means of providing information relevant to this decision. Using feedback obtained in response to a request for suggested improvements to the tool, the prototype was re-designed to provide a greater ease of functionality and greater accessibility on a wide variety of platforms. In addition to validating the usefulness of this tool for individual decision-making, this study identified areas which may be the subject of future consideration by the medical community and by government agencies. These areas include: a) ways of encouraging the further creation of online tools as educational aids in making genetic-testing and other health-care decisions, and b) the consideration of policies to help ensure that consumers have adequate information as they consider genetic testing for Alzheimer’s disease and other disorders. The enhanced decision aid will now be made available online at no cost to the wider public.
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