Introduction:In this phase of the ongoing What Matters Most study series, designed to evaluate concepts that are meaningful to people affected by Alzheimer's disease (AD), we quantified the importance of symptoms, impacts, and outcomes of AD to people at risk for or with AD and care partners of people with AD. Methods: We administered a web-based survey to individuals at risk for or with AD (Group 1: unimpaired cognition with evidence of AD pathology; Group 2: AD risk factors and subjective cognitive complaints/mild cognitive impairment; Group 3: mild AD) and to care partners of individuals with moderate AD (Group 4) or severe AD (Group 5). Respondents rated the importance of 42 symptoms, impacts, and outcomes on a scale ranging from 1 (''not at all important'') to 5 (''extremely important'').John Winfield-Deceased (2022).
IntroductionMild cognitive impairment remains substantially underdiagnosed, especially in disadvantaged populations. Failure to diagnose deprives patients and families of the opportunity to treat reversible causes, make necessary life and lifestyle changes and receive disease‐modifying treatments if caused by Alzheimer's disease. Primary care, as the entry point for most, plays a critical role in improving detection rates.MethodsWe convened a Work Group of national experts to develop consensus recommendations for policymakers and third‐party payers on ways to increase the use of brief cognitive assessments (BCAs) in primary care.ResultsThe group recommended three strategies to promote routine use of BCAs: providing primary care clinicians with suitable assessment tools; integrating BCAs into routine workflows; and crafting payment policies to encourage adoption of BCAs.DisscussionSweeping changes and actions of multiple stakeholders are necessary to improve detection rates of mild cognitive impairment so that patients and families may benefit from timely interventions.
Introduction: Insight into the relationship between concepts that matter to the people affected by Alzheimer's disease (AD) and the clinical outcome assessments (COAs) commonly used in AD clinical studies is limited. Phases 1 and 2 of the What Matters Most (WMM) study series identified and quantitatively confirmed 42 treatment-related outcomes that are important to people affected by AD. Methods: We compared WMM concepts rated as ''very important'' or higher to items included in COAs used commonly in AD studies. Results: Twenty COAs designed to assess signs, symptoms, and impacts across the spectrum of AD were selected for review. Among these 20 COAs, only 5 reflected 12 or more WMM concepts [Integrated Alzheimer's Disease Rating Scale (iADRS), Alzheimer's Disease Cooperative Study-Activities of Daily Living Inventory (ADCS-ADL), Alzheimer's Disease Cooperative Study-Activities of Daily Living Inventory-Mild Cognitive Impairment (ADCS-ADL-MCI), Alzheimer's Disease Composite Scores (ADCOMS), and Clinical Dementia Rating; Clinical Dementia Rating-Sum of Boxes (CDR/CDR-SB)]. John Winfield: Deceased (2022).
Background The Alzheimer's Disease Patient and Caregiver Engagement (AD PACE) Initiative works to identify and measure treatment‐related needs, preferences, and priorities of individuals across the continuum of AD. In the What Matters Most (WMM) study, we identified concepts of interest among patients and care partners and derived 42 items from these concepts. Method Respondents were recruited primarily from US clinical sites and assigned by a clinician to one of five groups: (1) AD risk factors without subjective memory complaints (SMC), (2) AD risk factors and SMC, and (3) mild AD, and care partners of patients with (4) moderate AD or (5) severe AD. Survey was administered online. Items were individually rated using a 5‐point verbal rating scale from 1 (Not at all important) to 5 (Extremely important). Responses were analyzed by group. Care partners (groups 4 and 5) rated item importance for themselves, not as patient proxies. Result Two hundred seventy‐four respondents (50‐65 in each group) completed the survey. Among all respondents, 193 (70.4%) were female, 173 (63.1%) identified as white, and 221 (80.7%) had education beyond high school. Among the three patient groups, the minimum (maximum) mean importance rating for any item was 3.4 (4.6) indicating all items were at least moderately to very important. Among care partners of patients with more severe AD, the minimum (maximum) mean importance rating was 2.1 (4.4); most items were rated as at least moderately important. One item (driving) was rated as less than a little important in group 5. Five items were among the most important for all groups: taking medications correctly, not feeling down or depressed, not feeling anxious, worried or stressed, being able to stay safe, not feeling like a burden to others. Conclusion For SMC and mild AD patients and those at risk for AD, all items were important. Among care partners of more severe patients, most items were important, and one was unimportant. These results may indicate that the 42 items in the WMM survey capture symptoms and behaviors that are meaningful to patients and care partners and should be considered when evaluating impacts of potential AD treatments.
Background The Alzheimer's Disease Patient and Caregiver Engagement (AD PACE) Initiative works to identify and measure treatment‐related needs, preferences, and priorities of individuals with or at risk for Alzheimer’s disease (AD) and care partners across the continuum of AD. First, the What Matters Most (WMM) study assessed needs, preferences and priorities of individuals in these populations. The next work will compare the WMM results to concepts in existing clinical outcome assessments (COAs) used in AD trials. This study identifies the most commonly used measures in AD research throughout the disease continuum. Method Targeted literature and ClinicalTrials.gov searches identified COAs used in AD populations. Studies included pharmacological intervention or registry studies with individuals with preclinical or prodromal AD, mild cognitive impairment (MCI), mild, moderate, or severe AD, or caregivers of these individuals, and at least one type of COA. Results Over 900 records were retrieved. Records from the literature and Clinicaltrials.gov searches were combined and coded, yielding a total of 109 records for final review. Performance measures were the most common type of COA identified. COAs were most frequently used in MCI, and mild and moderate AD populations; COAs were used less often among prodromal/preclinical and severe AD populations. The six most frequently reported COAs identified were ADAS‐Cog, Mini‐Mental State Examination (MMSE), Neuropsychiatric Inventory (NPI), Alzheimer's Disease Cooperative Study ‐ Activities of Daily living Inventory (ADCS‐ADL), Clinical Dementia Rating Scale (CDR), and Alzheimer's Disease Cooperative Study ‐ Clinical Global Impression of Change (ADCS‐CGIC). Conclusion Performance measures (e.g., MMSE & CDR) were the most common type of COA identified, followed by clinician‐reported and observational measures. Only three COAs were used in all 5 AD populations: MMSE, ADCS‐ADL, NPI. Very few patient‐reported measures were identified; the most frequently being the EQ5D ( used in 4/5 AD populations). The most commonly used clinician‐reported measures included the NPI, ADCS‐CGIC, and Columbia Suicide Severity Rating Scale (C‐SSRS). The next phase of this work will assess the extent to which these existing measures capture the concepts that are most important to individuals with or at risk for AD and their care partners as identified in the WMM study.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.