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信息披露:简短教育干预对研究参与者关于阿尔茨海默病生物标志物知识的影响。

Informing Disclosure: Efficacy of a Brief Educational Intervention on Research Participants' Knowledge about Alzheimer's Disease Biomarkers.

作者信息

Ketchum Fred B, Erickson Claire M, Basche Kristin E, Chin Nathaniel A, Rosario Hannah L, Johnson Sterling C, Clark Lindsay R

机构信息

Department of Neurology, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA.

Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA.

出版信息

J Alzheimers Dis. 2023;96(2):515-522. doi: 10.3233/JAD-230732.

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.

摘要

关于交流阿尔茨海默病(AD)生物标志物的建议包括预先披露参与者教育和咨询,以便个人能够做出明智的决定。在一个主要由来自威斯康星州阿尔茨海默病预防登记处的非西班牙裔白人、认知未受损的老年人组成的队列中,我们进行了一个结构化的淀粉样蛋白PET披露过程,其中包括知识评估和教育。参与者对AD生物标志物和研究的基线知识水平较高,但在痴呆症病因、早期AD症状、基因信息以及披露的心理社会后果方面存在信息需求。教育后知识得分有所提高,这突出了简短教育干预在改善关于生物标志物披露的明智决策方面的潜力。

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