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. 2025 Aug;34(8):2405-2418.
doi: 10.1007/s11136-025-03984-1. Epub 2025 Jun 5.

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

Ivan Caramanna  1   2 , Martin Klein  3   4 , Martin van den Bent  5 , Ahmed Idbaih  6 , Martin J B Taphoorn  7   8 , Linda Dirven  7   8 , Thierry Gorlia  9 , Jaap C Reijneveld  2   9   10   11 ; EORTC Quality of Life Group
Affiliations

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

Ivan Caramanna et al. Qual Life Res. 2025 Aug.

Abstract

Purpose: The 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.

Methods: Generic and disease-specific HRQOL was assessed using the EORTC QLQ-C30 and QLQ-BN20 in a sample of 500 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.

Results: Patient-proxy agreement in all HGG patients (N = 500) ranged from 0.399 to 0.743. Only 18.8% of all patients were neurocognitively intact. Lin's CCC ranged from 0.231 to 0.811 in cognitively impaired patients and their proxies, and from 0.376 to 0.732 in cognitively intact patients and their proxies.

Conclusions: The results of this study suggest that the moderate level of patient-proxy agreement observed in HGG patients would allow reliance on proxies' reports. However, the differences observed between neurocognitively impaired and intact patients stress the importance of taking into consideration patient's clinical and neurocognitive status as well as their mental capacity for adequate clinical decision making in general and for PRO-related issues.

Keywords: Glioma; Neurocognitive functioning; PROs; Patient-proxy agreement; Quality of life.

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Conflict of interest statement

Declarations. Conflict of interest: No authors have a potential conflict of interest. Human rights consent: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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