Section Medical Ethics, IQ Healthcare, Radboud UMC, Nijmegen, The Netherlands.
Sociol Health Illn. 2021 Feb;43(2):510-527. doi: 10.1111/1467-9566.13238. Epub 2021 Feb 26.
Emergent biomarkers for Alzheimer's disease (AD) are expected to provide earlier and more precise diagnoses. However, even if biomarkers live up to these expectations, it cannot be taken for granted that patients actually would value an earlier and more precise AD diagnosis. Based on an interview study, we aim to give more insight into the value of an AD diagnosis for patients, in existing as well as future practices, by describing how a diagnosis enables or may enable knowing, foreseeing, and acting in relation to one's illness. Our findings show that how people with AD value a diagnosis is not only characterised by great variety, as previous studies have shown, but also by profound ambivalence for the individual. With lack of treatment and poor prognostics as the status quo, this ambivalence and the way people deal with it are particularly linked to the far-from-straightforward capacity of an AD diagnosis to support anticipation of the future. We argue that in otherwise unchanged practices the envisioned future biomarker-based diagnostics are unlikely to reduce the ambivalence about receiving an AD diagnosis and, in particular, the challenges of anticipation that it entails. Rather, biomarker-based innovations may even reinforce some of the main issues involved.
用于诊断阿尔茨海默病（AD）的新兴生物标志物有望提供更早、更准确的诊断。然而，即使生物标志物能够满足这些期望，也不能想当然地认为患者实际上会重视更早、更准确的 AD 诊断。基于一项访谈研究，我们旨在通过描述诊断如何使人们能够或可能了解、预见和应对自己的疾病，深入了解诊断在现有和未来实践中的价值。我们的研究结果表明，人们对诊断的重视不仅如先前的研究所示，具有多样性，而且对个人来说也存在深刻的矛盾心理。由于缺乏治疗方法和预后不良，这种矛盾心理以及人们处理这种矛盾心理的方式，与 AD 诊断支持对未来的预期的能力息息相关，而非一目了然。我们认为，在其他方面保持不变的情况下，预计基于生物标志物的诊断技术不太可能减少对 AD 诊断的矛盾心理，特别是在预期方面带来的挑战。相反，基于生物标志物的创新技术甚至可能加剧其中的一些主要问题。
