Valuing biomarker diagnostics for dementia care: enhancing the reflection of patients, their care-givers and members of the wider public

Abstract

What is the value of an early (presymptomatic) diagnosis of dementia in the absence of effective treatment? There has been a lively scholarly debate over this question, but until now (future) patients have not played a large role in it. Our study supplements biomedical research into innovative diagnostics with an exlporation of its meanings and values according to (future) patients. Based on seven focusgroups with (future) patients and their care-givers, we conclude that stakeholders evaluate early diagnostics with respect to whether and how they expect it to empower their capacity to (self-) care. They value it, for instance, with respect to whether it (a) explains experienced complaints, (b) allows to start a process of psychological acceptance and social adaptation to the expected degeneration, (c) contributes to dealing with anxieties (with respect to inheritable versions of dementia), (d) informs adequately about when to start preparing for the end of life, (d) informs the planning of a request for euthanasia, or (e) allows society to deal with a growing amount of dementia patients. Our study suggests that information about disease is considered ‘harmful’ or ‘premature’ when recipients feel unable to act on that information in their (self-) care. The results of this research offers input to further ethical research. It invites to adopt a care perspective in evaluation and to seek ways to prevent the ‘harm’ that such diagnostic methods can bring about.

Ambivalent anticipation: How people with Alzheimer’s disease value diagnosis in current and envisioned future practices

“…Ethicists pointing out that clinical utility is a precondition for personal utility (Bunnik et al, 2018;Vanderschaeghe et al, 2018), actually affirm the importance of the knowing-acting nexus. Our study confirms earlier findings (e.g., van der Burg et al, 2019;van der Laan, 2016) that AD patients do indeed strongly link the value of "knowing what is the matter" and "knowing what will come" to possibilities for action. However, our study underscores that this link is far from straightforward-neither in present, nor in envisioned diagnostic practices.…”

“…By means of a survey, Wikler et al (2013) map public attitudes towards early (pre-symptomatic) testing for AD, showing | 513 AMBIVALENT ANTICIPATION a generally positive attitude among these possible future patients (see also Caselli et al, 2014). Van der Burg et al (2019) explore the potential value of pre-symptomatic AD diagnostics in more depth, from the perspective of a wider public, as well as current patients and caregivers. They find that while (future) patients and caregivers hold a broad range of sentiments towards pre-symptomatic testing, they all base their valuation on whether a diagnosis would enable one to care-for oneself, another, and society.…”

“…Secondly, a diagnosis and the associated awareness of the specific disease manifestations may empower one to better manage symptoms and adapt in daily life. This also includes taking responsibility and caring for others (van der Burg et al, 2019):…”

“…However, exploring how patients might value changes that could be brought about by emerging diagnostic tools, we had to go beyond collecting current experiences, and facilitate reflections on future scenarios, thus combining a mapping with an anticipatory approach. So far, only few anticipatory studies with AD patients have been done and, to our knowledge, only in relation to emergent pre-symptomatic diagnostics (van der Burg et al, 2019;Wikler et al, 2013).…”

Non-Invasive Imaging of the Carotid Artery

“…Though the dynamic process of plaque destabilization is not completely understood, several factors are of importance: plaque composition, plaque inflammation and biomechanical stress on the plaque. First, the association between composition of atherosclerotic plaques and recent or future stroke has been identified through histological assessment 27,[30][31][32][33] and later confirmed by in vivo imaging [34][35][36][37] . Structural features of a vulnerable plaque are a large LRNC, a thin fibrous cap overlying the plaque, neovascularization, and intraplaque hemorrhage (IPH; Figure 1.6).…”