Evidence map›Paper›PMID 33387292›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2021

Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure.

Roslyn A Prichard, Fei-Li Zhao, Julee Mcdonagh, Stephen Goodall, Patricia M Davidson, Phillip J Newton, Ben Farr-Wharton, Christopher S Hayward

Open access · greenAbstract read
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In one paragraph

Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
1.2field-weighted citation impact, top 14% 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

5 citing papers in PubMed, 6 citations in OpenAlex.

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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

8 authors at 5 institutions in 2 countries.

Roslyn A PrichardFaculty of Health, University of Technology, Ultimo, NSW, Australia. Roslyn.Prichard@uts.edu.au.ORCID http://orcid.org/0000-0001-8057-6605
Fei-Li ZhaoSchool of Biomedical Sciences and Pharmacy, The University of Newcastle, Callaghan, Australia.
Julee McdonaghFaculty of Health, University of Technology, Ultimo, NSW, Australia.
Stephen GoodallCentre for Health Economic Research and Evaluation, University of Technology Sydney, Ultimo, Australia.
Patricia M DavidsonJohns Hopkins School of Nursing, Johns Hopkins University, Baltimore, USA.
Phillip J NewtonSchool of Nursing and Midwifery, Western Sydney University, Parramatta, NSW, Australia.
Ben Farr-WhartonSchool of Business and Law, Edith Cowan University, Joondalup, WA, Australia.
Christopher S HaywardFaculty of Health, University of Technology, Ultimo, NSW, Australia.
University of Technology Sydney · AUEdith Cowan University · AUJohns Hopkins University · USUniversity of Newcastle Australia · AUWestern Sydney University · AU

Funding

National Health and Medical Research Council APP1133337
6 · The paper itself

Abstract

purposeHealth related quality of life (HRQoL) is rarely routinely measured in the clinical setting. In the absence of patient reported data, clinicians rely on proxy and informal estimates to support clinical decisions. This study compares clinician estimates (proxy) with patient reported HRQoL in patients with advanced heart failure and examines factors influencing discrepancies.

methodsSeventy-five patients with heart failure, (22 females, 53 males) completed the EQ-5D-5L questionnaire. Thirty-nine clinicians (11 medical, 23 nursing, 5 allied health) completed the proxy version (V1) producing 194 dyads. Correlation was assessed using Spearman's rank tests, systematic bias was examined with Bland-Altman analyses. Inter-rater agreement at the domain level, was investigated using linear weighted Kappa statistics while factors influencing the IRG were explored using independent student t-tests, analysis of variance and regression.

resultsThere was a moderate positive correlation between clinician HRQoL estimates and patient reported utility (r = 0.38; p < .0005). Mean clinician estimates were higher than patient reported utility (0.60 vs 0.54; p = 0.008), with significant underestimation of reported problems apparent in three of the five EQ-5D-5L domains. Patient sex (female), depressed mood and frailty were all associated with an increased inter-rater gap.

conclusionClinicians in this sample overestimated HRQoL. Factors affecting the inter-rater gap, including sex and depression, support formal HRQoL screening to enhance clinical conversations and decision making. The discrepancy also supports regulatory restriction on the use of expert opinion in the development of QALYs in health economic analysis.

Indexed as

Patient Reported Outcome MeasuresFemaleHeart FailureHumansMaleMiddle AgedProxyQuality of LifeSurveys and QuestionnairesHeart failurePatient reported outcomesProxyQuality of lifeSex difference

Identifiers

PMID33387292
OpenAlexW3117761673

What OpenQuestion holds

Textmetadata
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.