Michael Ekstract1, Golde I Holtzman2, Kye Y Kim3, Susan M Willis4, Doris T Zallen5,6. 1. Breakneck Turtles Productions, New York, New York, USA. 2. Department of Statistics, Virginia Tech, Blacksburg, Virginia, USA. 3. Carilion Clinic-Center for Healthy Aging and Virginia Tech Carilion School of Medicine, Roanoke, Virginia, USA. 4. Virginia Tech Center for Survey Research, Blacksburg, Virginia, USA. 5. Department of Science and Technology in Society, Virginia Tech, Blacksburg, Virginia, USA. 6. Department of Biomedical Science, Virginia Tech Carilion School of Medicine, Roanoke, Virginia, USA.
Abstract
PURPOSE: With the increasing interest in apolipoprotein E (APOE) genetic testing to estimate the risk of developing late-onset Alzheimer disease, new educational tools are needed to help people make the best decision for themselves about whether to undergo this test. This study evaluated an online tool to assist in this decision process. METHODS: A prototype decision aid was studied in a two-part survey that collected data from participants before and after they examined the decision aid. Both surveys had multiple-choice options and opportunities for open-ended responses, yielding quantitative and qualitative information. The responses before and after use of the aid were compared for each participant. RESULTS: A total of 1,262 individuals completed both surveys. The overall effectiveness of the decision aid was shown by three measures: 94% found the decision aid very helpful or somewhat helpful; general knowledge was increased; and some people changed their minds about APOE genetic testing, with 35% shifting to a higher likelihood of undergoing the test and 20% to a lower likelihood. Suggestions for improvements were noted and incorporated into the online tool. CONCLUSION: This decision aid can provide useful educational assistance to many individuals as they consider APOE genetic testing as well as facilitate further discussions with their health-care providers.Genet Med advance online publication 03 November 2016.
PURPOSE: With the increasing interest in apolipoprotein E (APOE) genetic testing to estimate the risk of developing late-onset Alzheimer disease, new educational tools are needed to help people make the best decision for themselves about whether to undergo this test. This study evaluated an online tool to assist in this decision process. METHODS: A prototype decision aid was studied in a two-part survey that collected data from participants before and after they examined the decision aid. Both surveys had multiple-choice options and opportunities for open-ended responses, yielding quantitative and qualitative information. The responses before and after use of the aid were compared for each participant. RESULTS: A total of 1,262 individuals completed both surveys. The overall effectiveness of the decision aid was shown by three measures: 94% found the decision aid very helpful or somewhat helpful; general knowledge was increased; and some people changed their minds about APOE genetic testing, with 35% shifting to a higher likelihood of undergoing the test and 20% to a lower likelihood. Suggestions for improvements were noted and incorporated into the online tool. CONCLUSION: This decision aid can provide useful educational assistance to many individuals as they consider APOE genetic testing as well as facilitate further discussions with their health-care providers.Genet Med advance online publication 03 November 2016.
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