Reactions to learning a "not elevated" amyloid PET result in a preclinical Alzheimer's disease trial

被引:21
|
作者
Grill, Joshua D. [1 ,2 ,3 ,4 ]
Cox, Chelsea G. [1 ]
Harkins, Kristin [5 ,6 ]
Karlawish, Jason [5 ,6 ,7 ,8 ]
机构
[1] Univ Calif Irvine, Inst Memory Impairments & Neurol Disorders, 3204 Biol Sci 3, Irvine, CA 92697 USA
[2] Univ Calif Irvine, Inst Clin & Translat Sci, Irvine, CA 92697 USA
[3] Univ Calif Irvine, Dept Psychiat & Human Behav, Irvine, CA 92717 USA
[4] Univ Calif Irvine, Dept Neurobiol & Behav, Irvine, CA 92717 USA
[5] Univ Penn, Penn Memory Ctr, Philadelphia, PA 19104 USA
[6] Univ Penn, Dept Med, Philadelphia, PA 19104 USA
[7] Univ Penn, Dept Med Eth & Hlth Policy, Philadelphia, PA 19104 USA
[8] Univ Penn, Dept Neurol, Philadelphia, PA 19104 USA
来源
基金
美国国家卫生研究院;
关键词
Disclosure; Preclinical; Asymptomatic; Alzheimer's disease; Prevention; DISCLOSURE; ASSOCIATION; CHALLENGES; SAFETY; IMPACT;
D O I
10.1186/s13195-018-0452-1
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
BackgroundThe experiences of biomarker-ineligible cognitively normal persons can inform trial conduct and the translation of preclinical Alzheimer's disease (AD) into clinical practice.MethodsWe interviewed 33 persons whose not elevated brain amyloid imaging biomarker result made them ineligible for a preclinical AD trial.ResultsMost participants (n=17) reported being informed that they did not demonstrate adequately elevated amyloid to qualify, whereas some (n=14) reported being told they had no amyloid or plaques. Relief (n=17) and disappointment related to not being able to participate (n=12) were the most common reactions to results. Nearly all participants would have made healthy lifestyle changes if they had received an elevated result, would have another scan, and would participate in another AD prevention trial.ConclusionsAlthough some participants may misconstrue results, disclosure of a not elevated amyloid result in the research setting causes little behavior change; willingness to participate in AD research remains.
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页数:8
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