生物标志物、疾病修正治疗和痴呆严重程度对阿尔茨海默病污名的相对贡献：基于情景的实验。
The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma: A vignette-based experiment.
机构信息
Department of Medicine, Division of Geriatrics, University of Pennsylvania, Philadelphia, PA, USA.
University of Pennsylvania, Perelman School of Medicine, Division of Geriatrics, Philadelphia, PA, USA.
出版信息
Soc Sci Med. 2022 Jan;292:114620. doi: 10.1016/j.socscimed.2021.114620. Epub 2021 Dec 1.
OBJECTIVE
The symptoms and prognosis of Alzheimer's disease (AD) dementia contribute to the public's negative reactions toward individuals with AD dementia and their families. But what if, using AD biomarker tests, diagnosis was made before the onset of dementia, and a disease-modifying treatment was available? This study tests the hypotheses that a "preclinical" diagnosis of AD and treatment that improves prognosis will mitigate stigmatizing reactions.
METHODS
A sample of U.S. adults were randomized to receive one vignette created by a 3 × 2 × 2 vignette-based experiment that described a person with varied clinical symptom severity (Clinical Dementia Rating stages 0 (no dementia), 1 (mild), or 2 (moderate)), AD biomarker test results (positive vs negative), and disease-modifying treatment (available vs not available). Between-group comparisons were conducted of scores on the Modified Family Stigma in Alzheimer's Disease Scale (FS-ADS).
RESULTS
The sample of 1,817 adults had a mean age two years younger than that of U.S. adults but was otherwise similar to the general adult population. The response rate was 63% and the completion rate was 96%. In comparisons of randomized groups, mild and moderate symptoms of dementia evoked stronger reactions on all FS-ADS domains compared to no dementia (all p < 0.001). A positive biomarker test result evoked stronger reactions on all but one FS-ADS domain (negative aesthetic attributions) compared to a negative biomarker result (all p < 0.001). Disease-modifying treatment had no measurable influence on stigma (all p > 0.05).
CONCLUSIONS
The stigmas of dementia spill over into preclinical AD, and availability of treatment does not alter that stigma. Translation of the preclinical AD construct from research into practice will require interventions that mitigate AD stigma to preserve the dignity and identity of individuals living with AD.
目的
阿尔茨海默病（AD）痴呆的症状和预后导致公众对 AD 痴呆患者及其家属产生负面反应。但是，如果使用 AD 生物标志物测试在痴呆症发作之前做出诊断，并且可以使用一种改变疾病进程的治疗方法呢？本研究检验了以下假设：AD 的“临床前”诊断和改善预后的治疗方法将减轻污名化反应。
方法
一项美国成年人样本被随机分配到一个由三因素两水平的情境实验创建的情景中，该情景描述了一个具有不同临床症状严重程度的人（临床痴呆评定量表 0 期（无痴呆）、1 期（轻度）或 2 期（中度））、AD 生物标志物测试结果（阳性与阴性）和改变疾病进程的治疗方法（可用与不可用）。对改良阿尔茨海默病家庭耻辱感量表（FS-ADS）的评分进行了组间比较。
结果
1817 名成年人的样本平均年龄比美国成年人年轻两岁，但在其他方面与一般成年人口相似。应答率为 63%，完成率为 96%。在随机分组的比较中，与无痴呆相比，轻度和中度痴呆症状在所有 FS-ADS 领域都引起了更强的反应（均 p<0.001）。与阴性生物标志物结果相比，阳性生物标志物结果在所有 FS-ADS 领域（负面审美归因除外）都引起了更强的反应（均 p<0.001）。改变疾病进程的治疗方法对耻辱感没有可衡量的影响（均 p>0.05）。
结论
痴呆症的耻辱感蔓延到临床前 AD，而治疗方法的可用性并不能改变这种耻辱感。将临床前 AD 概念从研究转化为实践将需要采取干预措施来减轻 AD 耻辱感，以维护患有 AD 的个体的尊严和身份。
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