Anticipating the Future in an Uncertain Present: How Individuals Living With Medically Unexplained Cognitive Complaints Value Biomarker-Based Prognostics

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2025-05-24 DOI:10.1111/hex.70284

Anne-Fleur van der Meer, Marjan Knippenberg, Denise Visser, Marianne Boenink

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引用次数: 0

Abstract

Introduction

In research on Alzheimer's disease (AD) individuals experiencing cognitive problems but not satisfying criteria for mild cognitive impairment (MCI) or AD are referred to as having ‘Subjective Cognitive Decline’ (SCD). A small subset of them will progress to a state justifying an AD diagnosis. AD research trying to identify prognostic biomarkers aims to inform individuals labelled with SCD about the future development of their complaints. This paper explores how persons experiencing these cognitive complaints currently anticipate the future and how they would value emerging biomarker-based prognostic tests.

Methods

Semi-structured interviews with 10 individuals experiencing cognitive complaints, some accompanied by their partners. The interviews were coded using ATLAS.ti 22. The exploratory qualitative analysis was conducted using thematic content analysis (TA).

Findings

The interviewees experience pervasive uncertainty concerning their persistent but medically unexplained cognitive symptoms. Lacking a diagnosis and a prognosis, they anticipate their future considering various scenarios, while mainly acting upon the scenario of developing further cognitive decline/AD dementia.

Interviewees often interpret questions about prognostication as asking about predicting the likelihood of a future diagnosis, clearly valuing the latter. Most interviewees are positive, assuming it would help them and their relatives prepare for the future. They have specific ideas about what type of prognostic information would be helpful, usually focusing on how cognitive decline would impact their lives, for example, what activities they will be able to continue to engage in, when they will no longer recognise loved ones or what character they will have as a patient.

Conclusion

People experiencing unexplained cognitive complaints experience pervasive uncertainty about their situation and future. They clearly value the idea of a test predicting with high certainty whether they will be diagnosed with AD in the future. Regarding prognostication, most interviewees expect that such tests could help prepare for the future. However, there is a discrepancy between the outcomes usually measured in prognostic research (like the expected speed of decline) and the specific outcomes meaningful to our interviewees. In view of this gap, it is important to reconsider whether and how the development of prognostic biomarker tests for people suffering from unexplained cognitive complaints can be better tailored to the needs of these individuals.

Patient or Public Contribution

During our interviews, we gathered the perspectives of 10 individuals suffering from medically unexplained cognitive complaints on the value of biomarker-based prognostics. These interviews were the primary data source. Individuals were also involved in the interpretation of our findings and critical evaluation of our preliminary conclusions.

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在不确定的现在预测未来：患有医学上无法解释的认知疾病的个体如何重视基于生物标志物的预后

在阿尔茨海默病（AD）的研究中，有认知问题但不符合轻度认知障碍（MCI）或AD标准的个体被称为“主观认知衰退”（SCD）。他们中的一小部分会发展到一个可以证明AD诊断的状态。AD研究试图确定预后生物标志物，旨在告知被标记为SCD的个体其投诉的未来发展。本文探讨了目前经历这些认知抱怨的人如何预测未来，以及他们如何重视新兴的基于生物标志物的预后测试。方法对10例认知障碍患者进行半结构化访谈，其中部分患者由其伴侣陪同。访谈使用ATLAS进行编码。ti 22。采用主题内容分析（TA）进行探索性定性分析。研究结果：受访者对其持续但医学上无法解释的认知症状普遍存在不确定性。由于缺乏诊断和预后，他们考虑到各种情况来预测他们的未来，而主要是在进一步发展认知能力下降/AD痴呆的情况下采取行动。受访者通常将有关预测的问题解释为询问预测未来诊断的可能性，显然重视后者。大多数受访者都持积极态度，认为这有助于他们和他们的亲戚为未来做准备。他们对哪种类型的预后信息会有帮助有具体的想法，通常关注认知能力下降将如何影响他们的生活，例如，他们将能够继续从事哪些活动，他们何时将不再认识亲人，或者他们作为病人将具有什么样的性格。结论出现不明原因认知抱怨的患者对自己的处境和未来普遍存在不确定性。他们显然很重视一种测试的想法，这种测试可以高度肯定地预测他们将来是否会被诊断为阿尔茨海默病。关于预测，大多数受访者期望这种测试有助于为未来做准备。然而，在预后研究中通常测量的结果（如预期下降速度）与对我们的受访者有意义的具体结果之间存在差异。鉴于这一差距，重要的是要重新考虑是否以及如何为患有不明原因认知疾病的人开发预后生物标志物测试，以更好地适应这些个体的需求。在我们的访谈中，我们收集了10位患有医学上无法解释的认知疾病的患者对基于生物标志物的预后价值的看法。这些访谈是主要的数据来源。个人也参与了对我们的发现的解释和对我们初步结论的批判性评估。

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

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.