TY - JOUR
T1 - Cognition and health-related quality of life in long-term survivors of high-grade glioma
T2 - an interactive perspective from patient and caregiver
AU - Spoor, Jochem K.H.
AU - Donders-Kamphuis, Marike
AU - Veenstra, Wencke S.
AU - van Dijk, Sarah A.
AU - Dirven, Clemens M.F.
AU - Sillevis Smitt, Peter A.E.
AU - van den Bent, Martin J.
AU - Leenstra, Sieger
AU - Satoer, Djaina D.
N1 - Publisher Copyright:
© The Author(s) 2024.
PY - 2024/4/3
Y1 - 2024/4/3
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85189208541&partnerID=8YFLogxK
U2 - 10.1007/s00701-024-06037-7
DO - 10.1007/s00701-024-06037-7
M3 - Article
C2 - 38565800
AN - SCOPUS:85189208541
SN - 0001-6268
VL - 166
JO - Acta Neurochirurgica
JF - Acta Neurochirurgica
IS - 1
M1 - 166
ER -