Health Outcome Prioritization in Alzheimer’s Disease: Understanding the Ethical Landscape

Abstract

Background: Dementia has been described as the greatest global health challenge in the 21st Century on account of longevity gains increasing its incidence, escalating health and social care pressures. These pressures highlight ethical, social, and political challenges about healthcare resource allocation, what health improvements matter to patients, and how they are measured. This study highlights the complexity of the ethical landscape, relating particularly to the balances that need to be struck when allocating resources; when measuring and prioritizing outcomes; and when individual preferences are sought. Objective: Health outcome prioritization is the ranking in order of desirability or importance of a set of disease-related objectives and their associated cost or risk. We analyze the complex ethical landscape in which this takes place in the most common dementia, Alzheimer’s disease. Methods: Narrative review of literature published since 2007, incorporating snowball sampling where necessary. We identified, thematized, and discussed key issues of ethical salience. Results: Eight areas of ethical salience for outcome prioritization emerged: 1) Public health and distributive justice, 2) Scarcity of resources, 3) Heterogeneity and changing circumstances, 4) Knowledge of treatment, 5) Values and circumstances, 6) Conflicting priorities, 7) Communication, autonomy and caregiver issues, and 8) Disclosure of risk. Conclusion: These areas highlight the difficult balance to be struck when allocating resources, when measuring and prioritizing outcomes, and when individual preferences are sought. We conclude by reflecting on how tools in social sciences and ethics can help address challenges posed by resource allocation, measuring and prioritizing outcomes, and eliciting stakeholder preferences.

Evaluation of core Biomarkers of Alzheimer’s disease in saliva and plasma measured by chemiluminescent enzyme immunoassays on a fully automated platform

“…First, several technical issues related to sample processing limit saliva for diagnostic purposes. Additionally, the secretion and composition of saliva may be affected by several factors, including medications, lifestyle, age, sex, and diseases [22,23]. Noteworthy, a bidirectional oral-brain axis connected through almost six routes has been documented [22].…”

Scientific, Ethical, and Practical Considerations for the Testing and Disclosure of Alzheimer Disease Biomarkers

“…With the advent of promising, biomarker-directed, amyloid monoclonal antibody therapy for Alzheimer disease (AD), 1 there is a need to understand the complex scientific, ethical, and practical implications related to biomarkers of neurodegenerative conditions, 2 including how they can be used to determine the onset, progression, and subtype of these disorders. As the clinical use of AD biomarkers moves beyond specialized centers, and as they become widely used to identify, diagnose, and track the progression of dementia, it will be important to develop protocols to disclose the presence of AD biomarkers to patients.…”

“…Preclinical or MCI trial participants and those considering genetic testing for inherited AD need to be aware of the implications for insurance and possibly employment. 2,6…”

“…6 However, capacity needs to be considered not just related to disease manifestations but also as part of population variation across educational, cultural, and linguistic aspects and beliefs. 2,9 If testing is considered, the requesting clinician should understand and be able to explain clearly the nature of the tests and assess the patient's/support person's expectations and plans. Of importance, there should be a commitment by the clinician or a key knowledgeable team member to be accessible after test disclosure, provide continuity of care over the disease course, or facilitate smooth transition to other clinicians as function declines through the disease stages.…”

“…Preclinical or MCI trial participants and those considering genetic testing for inherited AD need to be aware of the implications for insurance and possibly employment. 2,6 What then is a practical approach to AD biomarker testing? Competent assessment by the neurologist using clinical criteria and "routine" tests need to be conducted to exclude other dementias and treatable causes of cognitive decline.…”