Personal value of Alzheimer's disease biomarker testing and result disclosure from the patient and care partner perspective

IF 4.9 Q1 CLINICAL NEUROLOGY

Alzheimer''s and Dementia: Translational Research and Clinical Interventions Pub Date : 2024-04-08 DOI:10.1002/trc2.12463

Khushbu J. Patel, David Yang, Howard H. Feldman, Ging-Yuek R. Hsiung, Haakon B. Nygaard, John R. Best, Emily Dwosh, Julie M. Robillard, Mari L. DeMarco

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Abstract

INTRODUCTION

We described patients’ and care partners’ experiences with Alzheimer's disease (AD) cerebrospinal fluid (CSF) biomarker testing and result disclosure in routine care.

METHODS

IMPACT-AD BC is an observational study of clinic patients who underwent AD CSF biomarker testing as part of their routine medical care (n = 142). In the personal utility arm of the study, semi-structured phone interviews were conducted with a subset of patients (n = 34), and separately with their care partners (n = 31). Post-disclosure interviews were conducted ∼1 month and ∼6 months after biomarker result disclosure and investigated the patients’ decision-making process around testing, impact of receiving results, wellness and lifestyle changes, and future planning.

RESULTS

A majority of patients (90%) rated their decision to undergo testing as “easy.” Post-disclosure, the majority (82%) reported overall positive feelings from having greater certainty and the ability to plan ahead, and results spurred them to adopt/continue healthy behaviors such as exercise (84%) and cognitive activities (54%). Care partners expressed relief from having more diagnostic certainty, increased appreciation of future caregiving responsibilities, and a desire to connect with support resources.

DISCUSSION

Perspectives of persons with lived experience in dementia provide new insight into the value of biomarker testing and should be included as part of evidence-guided considerations for pre-test counseling and result disclosure. Moreover, study findings identify an interval when patients and care partners are highly receptive to positive lifestyle and medical interventions.

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从患者和护理伙伴的角度看阿尔茨海默病生物标志物检测和结果披露的个人价值

简介我们描述了患者和护理伙伴在常规护理中接受阿尔茨海默病（AD）脑脊液（CSF）生物标志物检测和结果披露的经历。方法 IMPACT-AD BC 是一项观察性研究，研究对象是接受 AD 脑脊液生物标记物检测的门诊患者（n = 142），这是常规医疗护理的一部分。在研究的个人效用部分，对部分患者（34 人）进行了半结构化电话访谈，并分别对其护理伙伴（31 人）进行了访谈。在生物标记物结果公布 1 个月和 6 个月后分别进行了公布后访谈，调查了患者围绕检测的决策过程、收到结果的影响、健康和生活方式的改变以及未来规划。结果大多数患者（90%）认为他们的检测决定是 "容易的"。结果公布后，大多数患者（82%）表示总体感觉良好，因为有了更大的确定性和提前计划的能力，结果促使他们采取/继续健康的行为，如运动（84%）和认知活动（54%）。护理伙伴们则表示，诊断结果更加确定让他们感到欣慰，他们对未来的护理责任有了更多的认识，并希望与支持资源建立联系。讨论有过痴呆症生活经验的人的观点为生物标志物检测的价值提供了新的视角，应作为证据指导下的检测前咨询和结果披露考虑因素的一部分。此外，研究结果还确定了患者和护理伙伴高度接受积极的生活方式和医疗干预的时间间隔。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Alzheimer''s and Dementia: Translational Research and Clinical Interventions Medicine-Psychiatry and Mental Health

CiteScore

10.10

自引率

2.10%

发文量

134

审稿时长

10 weeks

期刊介绍： Alzheimer''s & Dementia: Translational Research & Clinical Interventions (TRCI) is a peer-reviewed, open access,journal from the Alzheimer''s Association®. The journal seeks to bridge the full scope of explorations between basic research on drug discovery and clinical studies, validating putative therapies for aging-related chronic brain conditions that affect cognition, motor functions, and other behavioral or clinical symptoms associated with all forms dementia and Alzheimer''s disease. The journal will publish findings from diverse domains of research and disciplines to accelerate the conversion of abstract facts into practical knowledge: specifically, to translate what is learned at the bench into bedside applications. The journal seeks to publish articles that go beyond a singular emphasis on either basic drug discovery research or clinical research. Rather, an important theme of articles will be the linkages between and among the various discrete steps in the complex continuum of therapy development. For rapid communication among a multidisciplinary research audience involving the range of therapeutic interventions, TRCI will consider only original contributions that include feature length research articles, systematic reviews, meta-analyses, brief reports, narrative reviews, commentaries, letters, perspectives, and research news that would advance wide range of interventions to ameliorate symptoms or alter the progression of chronic neurocognitive disorders such as dementia and Alzheimer''s disease. The journal will publish on topics related to medicine, geriatrics, neuroscience, neurophysiology, neurology, psychiatry, clinical psychology, bioinformatics, pharmaco-genetics, regulatory issues, health economics, pharmacoeconomics, and public health policy as these apply to preclinical and clinical research on therapeutics.