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Published in: Acta Neurochirurgica 1/2024

Open Access 01-12-2024 | Glioma | Original Article

Cognition and health-related quality of life in long-term survivors of high-grade glioma: an interactive perspective from patient and caregiver

Authors: Jochem K. H. Spoor, Marike Donders-Kamphuis, Wencke S. Veenstra, Sarah A. van Dijk, Clemens M. F. Dirven, Peter A. E. Sillevis Smitt, Martin J. van den Bent, Sieger Leenstra, Djaina D. Satoer

Published in: Acta Neurochirurgica | Issue 1/2024

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Abstract

Background

The health-related quality of life (HRQoL) and cognition are important indicators for the quality of survival in patients with high-grade glioma (HGG). However, data on long-term survivors and their caregivers are scarce. We aim to investigate the interaction between cognition and HRQoL in long-term survivors, their caregivers’ evaluations, and the effect on caregiver strain and burden.

Methods

21 long-term HGG (8 WHO grade III and 13 WHO grade IV) survivors (survival ≥ 5 years) and 15 caregivers were included. Cognition (verbal memory, attention, executive functioning, and language), HRQoL, anxiety and depression, caregiver strain, and caregiver burden were assessed with standardized measures. Questionnaires were completed by patients and/or their caregivers.

Results

Mean survival was 12 years (grade III) and 8 years (grade IV). Cognition was significantly impaired with a large individual variety. Patients’ general HRQoL was not impaired but all functioning scales were deviant. Patient-proxy agreement was found in most HRQoL subscales. Three patients (14%) showed indications of anxiety or depression. One-third of the caregivers reported a high caregiver strain or a high burden. Test scores for attention, executive functioning, language, and/or verbal memory were correlated with perceived global health status, cognitive functioning, and/or communication deficits. Caregiver burden was not related to cognitive deficits.

Conclusions

In long-term HGG survivors maintained HRQoL seems possible even when cognition is impaired in a large variety at the individual level. A tailored approach is therefore recommended to investigate the cognitive impairments and HRQoL in patients and the need for patient and caregiver support.
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Metadata
Title
Cognition and health-related quality of life in long-term survivors of high-grade glioma: an interactive perspective from patient and caregiver
Authors
Jochem K. H. Spoor
Marike Donders-Kamphuis
Wencke S. Veenstra
Sarah A. van Dijk
Clemens M. F. Dirven
Peter A. E. Sillevis Smitt
Martin J. van den Bent
Sieger Leenstra
Djaina D. Satoer
Publication date
01-12-2024
Publisher
Springer Vienna
Published in
Acta Neurochirurgica / Issue 1/2024
Print ISSN: 0001-6268
Electronic ISSN: 0942-0940
DOI
https://doi.org/10.1007/s00701-024-06037-7

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