Evidence map›Paper›PMID 35982202›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2022

Neurocognitive impairment and patient-proxy agreement on health-related quality of life evaluations in recurrent high-grade glioma patients.

Ivan Caramanna, Martin Klein, Martin van den Bent, Ahmed Idbaih, Wolfgang Wick, Martin J B Taphoorn, Linda Dirven, Andrew Bottomley, Jaap C Reijneveld, EORTC Quality of Life Group and EORTC Brain Tumor Group

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It has been retracted, and should not be counted. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
–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

5 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
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  3. Article
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  5. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

10 authors.

Ivan CaramannaDepartment of Medical Psychology, Amsterdam UMC, Vrije Universiteit Amsterdam, de Boelelaan 1118, PK 1Y 176, 1081 HZ, Amsterdam, The Netherlands.
Martin KleinDepartment of Medical Psychology, Amsterdam UMC, Vrije Universiteit Amsterdam, de Boelelaan 1118, PK 1Y 176, 1081 HZ, Amsterdam, The Netherlands. m.klein@amsterdamumc.nl.ORCID http://orcid.org/0000-0003-1520-499X
Martin van den BentBrain Tumor Center at Erasmus MC Cancer Institute, Rotterdam, The Netherlands.
Ahmed IdbaihSorbonne Université, Inserm, CNRS, UMR S 1127, Institut du Cerveau et de la Moelle Épinière, ICM, AP-HP, Hôpitaux Universitaires La Pitié Salpêtrière - Charles Foix, Service de Neurologie 2-Mazarin, 75013, Paris, France.
Wolfgang WickClinical Cooperation Unit Neurooncology, German Cancer Consortium (DKTK), German Cancer Research Center (DKFZ) & Department of Neurology, Heidelberg University Hospital, Heidelberg, Germany.
Martin J B TaphoornDepartment of Neurology, Leiden University Medical Centre, Leiden, The Netherlands.
Linda DirvenDepartment of Neurology, Leiden University Medical Centre, Leiden, The Netherlands.
Andrew BottomleyQuality of Life Department, European Organization for Research and Treatment of Cancer, Brussels, Belgium.
Jaap C ReijneveldBrain Tumor Center Amsterdam, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.
EORTC Quality of Life Group and EORTC Brain Tumor Group

Funding

European Organisation for Research and Treatment of Cancer (007/2016)
6 · The paper itself

Abstract

purposeThe rate of missing data on patient-reported health-related quality of life (HRQOL) in brain tumor clinical trials is particularly high over time. One solution to this issue is the use of proxy (i.e., partner, relative, informal caregiver) ratings in lieu of patient-reported outcomes (PROs). In this study we investigated patient-proxy agreement on HRQOL outcomes in high-grade glioma (HGG) patients.

methodsGeneric and disease-specific HRQOL were assessed using the EORTC QLQ-C30 and QLQ-BN20 in a sample of 501 patient-proxy dyads participating in EORTC trials 26101 and 26091. Patients were classified as impaired or intact, based on their neurocognitive performance. The level of patient-proxy agreement was measured using Lin's concordance correlation coefficient (CCC) and the Bland-Altman limit of agreement. The Wilcoxon signed-rank test was used to evaluate differences between patients' and proxies' HRQOL.

resultsPatient-proxy agreement in all HGG patients (N = 501) ranged from 0.082 to 0.460. Only 18.8% of all patients were neurocognitively intact. Lin's CCC ranged from 0.088 to 0.455 in cognitively impaired patients and their proxies and from 0.027 to 0.538 in cognitively intact patients and their proxies.

conclusionWhile patient-proxy agreement on health-related quality of life outcomes is somewhat higher in cognitively intact patients, agreement in high-grade glioma patients is low in general. In light of these findings, we suggest to cautiously consider the use of proxy's evaluation in lieu of patient-reported outcomes, regardless of patient's neurocognitive status.

Indexed as

Brain NeoplasmsGliomaHumansNeoplasm Recurrence, LocalProxyQuality of LifeSurveys and QuestionnairesGliomaNeurocognitive functioningPatient–proxy agreementPROsQuality of Life

Identifiers

PMID35982202
PMCPMC9546946

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Registered trials

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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.