Evidence map›Paper›PMID 39975468›Full record

ArticleAlzheimer's & dementia (New York, N. Y.)

Meaningful to whom? Minimal clinically important differences and the priorities of individuals living with dementia for everyday function.

Andrea Gilmore-Bykovskyi, Kayla Dillon, Beth Fields, Clark Benson, Dorothy Farrar Edwards

Abstract read
In one paragraph

Article in Alzheimer's & dementia (New York, N. Y.). The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
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

3 citing papers in PubMed.

  1. Review
  2. Article
  3. Article
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

5 authors.

Andrea Gilmore-BykovskyiBerbeeWalsh Department of Emergency Medicine University of Wisconsin-Madison School of Medicine & Public Health Madison Wisconsin USA.
Kayla DillonBerbeeWalsh Department of Emergency Medicine University of Wisconsin-Madison School of Medicine & Public Health Madison Wisconsin USA.
Beth FieldsDepartment of Kinesiology University of Wisconsin-Madison School of Education Madison Wisconsin USA.
Clark BensonBerbeeWalsh Department of Emergency Medicine University of Wisconsin-Madison School of Medicine & Public Health Madison Wisconsin USA.
Dorothy Farrar EdwardsDepartment of Kinesiology University of Wisconsin-Madison School of Education Madison Wisconsin USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) have a significant impact on an individual's functional cognitive abilities, highlighting the need to prioritize measures of function in evaluating minimally clinically important difference (MCID) thresholds in AD/ADRD research. Input directly from individuals living with AD/ADRD on measures of function are lacking in MCID discussions, including what it means to live with AD/ADRD and what type and degree of improvements are most meaningful across the disease continuum. Most measures for assessing function in AD/ADRD trials are largely focused on basic and instrumental activities of daily living (BADL, IADL), which lack aspects of everyday function that matter most to individuals living with AD/ADRD. Expanding outcome evaluation to other dimensions of everyday function and diversifying measurement approaches is essential for optimizing inclusion of personally meaningful aspects of everyday function prioritized by individuals living with AD/ADRD and improving detection of potentially more sensitive changes in functioning. This perspective outlines four directions to expand and integrate what matters most to individuals living with AD/ADRD into trial outcome evaluation, including (1) consideration of how what matters most to individuals living with AD/ADRD may change across the disease continuum from mild to advanced dementia, (2) identification and evaluation of goals around strengths-based domains such as social participation rather than solely emphasizing deficits and losses, (3) utilization of goal-attainment scaling to more specifically match individually-specific functional goals, and (4) strengthening the inclusion and use of self-report and performance-based measures of function and triangulating these measures with informant-report measures. Highlights: Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) have a significant impact on an individual' functional cognitive abilities, of which changes in these abilities are measured through detection of minimally clinically important difference (MCID) thresholds to determine the effectiveness of AD/ADRD clinical trials.Widely used measures for assessing MCID thresholds in AD/ADRD trials focus on basic and instrumental activities of daily living, presenting opportunities to expand measurement of MCID to account for other dimensions of everyday function that are prioritized by individuals living with AD/ADRD.To expand outcome evaluation and improve integration of aspects of functioning that matter most to people living with AD/ADRD, we identify opportunities to incorporate more diverse strategies via goal-attainment scaling, self-report, and performance-based measures as appropriate. We also highlight the importance of incorporating strengths-based domains such as social participation, moving beyond deficit-focused assessment of functioning.

Indexed as

dementiadetectiondisease continuumeveryday functionminimally clinically important difference

Identifiers

PMID39975468
PMCPMC11837733

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.