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Article type: Short Communication
Authors: Ketchum, Fred B.a; * | Erickson, Claire M.b | Basche, Kristin E.c | Chin, Nathaniel A.c | Rosario, Hannah L.d | Johnson, Sterling C.c; d | Clark, Lindsay R.c; d
Affiliations: [a] Department of Neurology, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA | [b] Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA | [c] Department of Medicine, Division of Geriatrics & Gerontology, University of Wisconsin-Madison School of Medicine and Public Health, Madison, WI, USA | [d] Geriatric Research Education and Clinical Center, William S. Middleton Memorial Veterans Hospital, Madison, WI, USA
Correspondence: [*] Correspondence to: Fred Ketchum, Department of Neurology, School of Medicine and Public Health, University of Wisconsin, Madison, 1685 Highland Avenue, Madison, WI 53705, USA. E-mail: [email protected].
Abstract: Recommendations for communicating Alzheimer’s disease (AD) biomarkers include pre-disclosure participant education and counseling, to allow individuals to make an informed decision. In a cohort of largely non-Hispanic White, cognitively unimpaired older adults from the Wisconsin Registry for Alzheimer’s Prevention, we conducted a structured amyloid PET disclosure process that included knowledge assessment and education. Baseline participant knowledge about AD biomarkers and research was high, but information needs existed around dementia causes, early AD symptoms, genetic information, and psychosocial consequences of disclosure. Knowledge scores increased after education, highlighting the potential of brief educational interventions to improve informed decision-making about biomarker disclosure.
Keywords: Alzheimer’s disease, biomarker disclosure, dementia education, ethics, preclinical diagnosis, shared decision making
DOI: 10.3233/JAD-230732
Journal: Journal of Alzheimer's Disease, vol. 96, no. 2, pp. 515-522, 2023
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