Evidence map›Paper›PMID 41319818›Full record

ArticleJournal of pain and symptom management2026

Discordance in Ratings of Symptoms Experienced by Nursing Home Residents With Cognitive Impairment.

Kathleen T Unroe, Mary Ersek, Timothy E Stump, Alexander Floyd, Matthew Nesvet, Lieve Van den Block, Wanzhu Tu, John G Cagle

Registry-linked trialAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of pain and symptom management, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04520698 (Utilizing Palliative Leaders In Facilities to Transform Care for Alzheimer's Disease), which is not on this map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing 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.

NCT04520698 nacompletednot on this map

Utilizing Palliative Leaders In Facilities to Transform Care for Alzheimer's Disease

TypeinterventionalSponsorIndiana UniversityRan2021 to 2025Enrolled1,322ConditionsAlzheimer DiseaseArmsUPLIFT-AD
3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

8 authors.

Kathleen T UnroeIndiana University School of Medicine (K.T.U., T.E.S., M.N., W.T.), Indianapolis, Indiana, USA; Regenstrief Institute Inc (K.T.U., A.F., M.N.), Indianapolis, Indiana, USA. Electronic address: kunroe@iu.edu.
Mary ErsekUniversity of Pennsylvania School of Nursing (M.E.), Philadelphia, Pennsylvania, USA.
Timothy E StumpIndiana University School of Medicine (K.T.U., T.E.S., M.N., W.T.), Indianapolis, Indiana, USA; Department of Biostatistics and Health Data Science (T.E.S., W.T.), Indiana University, Indianapolis, Indiana, USA.
Alexander FloydRegenstrief Institute Inc (K.T.U., A.F., M.N.), Indianapolis, Indiana, USA.
Matthew NesvetIndiana University School of Medicine (K.T.U., T.E.S., M.N., W.T.), Indianapolis, Indiana, USA; Regenstrief Institute Inc (K.T.U., A.F., M.N.), Indianapolis, Indiana, USA.
Lieve Van den BlockVUB-UGhent End-of-Life Care Research Group (L.V.D.B.), Vrije Universiteit Brussel (VUB), Brussels, Belgium.
Wanzhu TuIndiana University School of Medicine (K.T.U., T.E.S., M.N., W.T.), Indianapolis, Indiana, USA; Department of Biostatistics and Health Data Science (T.E.S., W.T.), Indiana University, Indianapolis, Indiana, USA.
John G CagleUniversity of Maryland School of Social Work (J.G.C.), Baltimore, Maryland, USA.

Funding

UPLIFT-AD (Utilizing Palliative Leaders in Facilities to Transform care for Alzheimer's Disease) interventionR01AG066922 · NIA · INDIANA UNIVERSITY INDIANAPOLIS · PI CAGLE, JOHN GARLAND, UNROE, KATHLEEN T · 2020 to 2024
$3.5M
NIA NIH HHS R01 AG066922
6 · The paper itself

Abstract

contextEvaluation of palliative care programs in nursing homes often includes symptom assessments. For residents with cognitive impairment, proxy symptom reports, such as those from family members or nursing home staff, may be used as outcome measures.

objectivesThis analysis compares differences between family and staff proxy reports of symptoms of nursing home residents with moderate to severe cognitive impairment.

methodsData were collected as part of a clinical trial, conducted in 16 nursing homes (NHs) in Indiana and Maryland (U.S.). We calculated the difference in total modified End-of-Life Dementia Comfort Assessment in Dying (EOLD-CAD) scores between family and staff respondents for 194 residents, and quantified characteristics associated with discordance.

resultsAbout half of responding staff were licensed nurses and 37% were certified nursing assistants. Adult children of residents were the most common (57%) family respondents. There was fair agreement between the respondent groups (kappa = 0.26) for the total modified EOLD-CAD scale. Overall, family members reported higher symptom burden than staff. Some symptoms, including discomfort, pain, restlessness and agitation, were reported as more burdensome by both groups of proxies vs. symptoms such as gurgling or choking. Proxy symptom reports on residents with more advanced cognitive impairment were less likely to be substantially discordant (OR = 0.50, 95% CI 0.26, 0.99, P = 0.047).

conclusionProxies are often used to report symptom experiences for people living with cognitive impairment. Multiple perspectives may be needed to obtain a fuller picture of symptom burden in this population. REGISTRATION: CLINICALTRIALS.GOV: NCT04520698.

Indexed as

Cognitive DysfunctionNursing HomesSymptom AssessmentAgedAged, 80 and overFamilyFemaleHumansIndianaMaleMarylandMiddle AgedPalliative CareProxyTerminal CaredementiaNursing homeproxy reportsymptoms

Identifiers

PMID41319818
PMCPMC12927396

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

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.