Evidence map›Paper›PMID 36763306›Full record

ArticleNeurology and therapy2023

Assessing What Matters to People Affected by Alzheimer's Disease: A Quantitative Analysis.

Brett Hauber, Russ Paulsen, Holly B Krasa, George Vradenburg, Meryl Comer, Leigh F Callahan, John Winfield, Michele Potashman, Ann Hartry, Daniel Lee and 13 more

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Neurology and therapy, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.

0numbers the graph read from it
0cells of the map it votes in
17citing papers in PubMed
4.5field-weighted citation impact, top 5% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

17 citing papers in PubMed, 20 citations in OpenAlex.

  1. Trial
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  5. Priorities of people living with Alzheimer's and care partners: What Matters Most?Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026
    Observational
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

23 authors at 10 institutions in 2 countries.

Brett HauberRTI Health Solutions, 3040 Cornwallis Road, PO Box 12194, Research Triangle Park, NC, 27709-2194, USA.
Russ PaulsenUsAgainstAlzheimer's, Washington, DC, 20043, USA.
Holly B KrasaBlue Persimmon Group LLC, Washington, DC, 20016, USA.
George VradenburgUsAgainstAlzheimer's, Washington, DC, 20043, USA.
Meryl ComerUsAgainstAlzheimer's, Washington, DC, 20043, USA.
Leigh F CallahanUniversity of North Carolina, Chapel Hill, NC, 27599, USA.
John WinfieldUniversity of North Carolina, Chapel Hill, NC, 27599, USA.
Michele PotashmanBiogen Inc, Cambridge, MA, 02142, USA.
Ann HartryLundbeck LLC, Deerfield, IL, 60015, USA.
Daniel LeeOtsuka Pharmaceutical Development and Commercialization Inc., Princeton, NJ, 08540, USA.
Hilary WilsonBoehringer Ingelheim, Burlington, ON, L7L 5H4, Canada.
Deborah L HoffmanTakeda Pharmaceuticals, Cambridge, MA, 02139, USA.
Dan WiebergHome Instead Inc, Omaha, NE, 68154, USA.
Ian N KremerLEAD Coalition (Leaders Engaged on Alzheimer's Disease), Washington, DC, 20043, USA.
Geraldine A TaylorMemory Advocate Peers (MAP), New York, NY, 10023, USA.
James M TaylorMemory Advocate Peers (MAP), New York, NY, 10023, USA.
Debra LappinFaegre Drinker Consulting, Washington, DC, 20001, USA.
Allison D MartinFaegre Drinker Consulting, Washington, DC, 20001, USA.
Terry FrangiosaUsAgainstAlzheimer's, Washington, DC, 20043, USA.
Virginia BiggarUsAgainstAlzheimer's, Washington, DC, 20043, USA.
Christina SlotaRTI Health Solutions, 3040 Cornwallis Road, PO Box 12194, Research Triangle Park, NC, 27709-2194, USA.
Carla RomanoRTI Health Solutions, 3040 Cornwallis Road, PO Box 12194, Research Triangle Park, NC, 27709-2194, USA.
Dana B DiBenedettiRTI Health Solutions, 3040 Cornwallis Road, PO Box 12194, Research Triangle Park, NC, 27709-2194, USA. ddibenedetti@rti.org.
UsAgainstAlzheimer · USRTI Health Solutions · USUniversity of North Carolina at Chapel Hill · USBiogen (United States) · USBlue Pencil Group (United States) · USBoehringer Ingelheim (Canada) · CALundbeck (United States) · USOtsuka (United States) · USQuality Living · USTakeda (United States) · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionIn 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.

methodsWe 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").

resultsAmong the 274 respondents (70.4% female; 63.1% white), over half of patient respondents rated all 42 items as "very important" or "extremely important," while care partners rated fewer items as "very important" or "extremely important." Among the three patient groups, the minimum (maximum) mean importance rating for any item was 3.4 (4.6), indicating that all items were at least moderately to very important. Among care partners of people with moderate or severe AD, the minimum (maximum) mean importance rating was 2.1 (4.4), indicating that most items were rated as at least moderately important. Overall, taking medications correctly, not feeling down or depressed, and staying safe had the highest importance ratings among both patients and care partners, regardless of AD phase.

conclusionConcepts of importance to individuals affected by AD go beyond the common understanding of "cognition" or "function" alone, reflecting a desire to maintain independence, overall physical and mental health, emotional well-being, and safety. Preservation of these attributes may be key to understanding whether interventions deliver clinically meaningful outcomes.

Indexed as

Alzheimer’s diseaseCaregiverClinical meaningfulnessOutcomesPatientPreferenceValue

Identifiers

PMID36763306
PMCPMC10043143
OpenAlexW4319827031

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.