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

TL;DR

This study examines how well proxies (like family members) can report on the quality of life of high-grade glioma patients compared to the patients themselves, especially when patients have neurocognitive impairments.

Contribution

The study provides new insights into patient-proxy agreement on HRQOL in HGG patients, highlighting the impact of neurocognitive status.

Findings

Patient-proxy agreement ranged from moderate to substantial, with CCC values between 0.231 and 0.811 for impaired patients.

Only 18.8% of patients were neurocognitively intact, emphasizing the importance of clinical and neurocognitive status in PRO assessments.

Results suggest that proxies can be relied upon, but differences between impaired and intact patients highlight the need for careful clinical consideration.

Abstract

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.

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.

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.

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.

The online version contains supplementary material available at 10.1007/s11136-025-03984-1.

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