Jessica Mozersky1, Sarah Hartz2, Erin Linnenbringer3, Lillie Levin1, Marissa Streitz4, Kristin Stock5, Krista Moulder4, John C Morris4. 1. Bioethics Research Center, Division of General Medical Sciences, Washington University School of Medicine, St. Louis, MO, USA. 2. Department of Psychiatry, Washington University School of Medicine, St. Louis, MO. 3. Department of Surgery, Division of Public Health Sciences, Washington University School of Medicine, St. Louis, MO, USA. 4. Department of Neurology, Washington University School of Medicine, St. Louis, MO; and Knight Alzheimer Disease Research Center, Washington University School of Medicine, St. Louis, MO, USA. 5. Washington University Danforth College of Arts and Sciences (post-baccalaureate program) and Music Speaks, LLC.
Abstract
BACKGROUND: Cognitively normal (CN) older adults participating in Alzheimer's disease (AD) research increasingly ask for their research results-including genetic and neuroimaging findings-to understand their risk of developing AD dementia. AD research results are typically not returned for multiple reasons, including possible psychosocial harms of knowing one is at risk of a highly feared and untreatable disease. OBJECTIVE: We developed materials that convey information about 5-year absolute risk of developing AD dementia based on research results. METHODS: 20 CN older adults who received a research brain MRI result were interviewed regarding their wishes for research results to inform material development (Pilot 1). Following material development, 17 CN older adults evaluated the materials for clarity and acceptability (Pilot 2). All participants were community-dwelling older adults participating in longitudinal studies of aging at a single site. RESULTS: Participants want information on their risk of developing AD dementia to better understand their own health, satisfy curiosity, inform family, and future planning. Some articulated concerns, but the majority wanted to know their risk despite the limitations of information. Participants found the educational materials and results report clear and acceptable, and the majority would want to know their research results after reviewing them. CONCLUSION: These materials will be used in a clinical study examining the psychosocial and cognitive effects of offering research results to a cohort of CN older adults. Future AD research may incorporate the return of complex risk information to CN older adults, and materials are needed to communicate this information.
BACKGROUND: Cognitively normal (CN) older adults participating in Alzheimer's disease (AD) research increasingly ask for their research results-including genetic and neuroimaging findings-to understand their risk of developing AD dementia. AD research results are typically not returned for multiple reasons, including possible psychosocial harms of knowing one is at risk of a highly feared and untreatable disease. OBJECTIVE: We developed materials that convey information about 5-year absolute risk of developing AD dementia based on research results. METHODS: 20 CN older adults who received a research brain MRI result were interviewed regarding their wishes for research results to inform material development (Pilot 1). Following material development, 17 CN older adults evaluated the materials for clarity and acceptability (Pilot 2). All participants were community-dwelling older adults participating in longitudinal studies of aging at a single site. RESULTS: Participants want information on their risk of developing AD dementia to better understand their own health, satisfy curiosity, inform family, and future planning. Some articulated concerns, but the majority wanted to know their risk despite the limitations of information. Participants found the educational materials and results report clear and acceptable, and the majority would want to know their research results after reviewing them. CONCLUSION: These materials will be used in a clinical study examining the psychosocial and cognitive effects of offering research results to a cohort of CN older adults. Future AD research may incorporate the return of complex risk information to CN older adults, and materials are needed to communicate this information.
Entities:
Keywords:
Alzheimer’s disease dementia; biomarkers; cognitively normal older adults; genetics; health communication; imaging; pre-symptomatic; research ethics; return of research results; risk
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