OS09.6.A Cognition and health-related quality of life in long time survivors of high-grade glioma

BACKGROUND Although prognosis is poor in high-grade glioma (HGG) patients, some become a long-term survivor (LTS). Health-related quality of life (HRQOL) and cognition are seen as indicators for quality of survival in HGG but data in LTS and their caregivers are scarce. We aim to investigate cognition and HRQOL in LTS with evaluation by their proxies. MATERIAL AND METHODS We included LTS with initial HGG-diagnosis between 1999–2014. Cognition was assessed with: Boston Naming Test, shortened Token Test, verbal (Category and Letter) Fluency, Diagnostic Instrument of Mild Aphasia, Hopkins Verbal Learning Test and Trail Making Test (A, B, B/A) and HRQOL with: EORTC Quality of Life Questionnaire (C30) and Brain Cancer Module (BN20). 15 Proxies evaluated patients’ HRQOL with: C30, BN20 and they filled in a burden scale: Caregiver Strain Index (CSI). RESULTS 21 patients with grade III or IV glioma and 7 years (range 5–20 years) median survival after diagnosis participated. Compared to normative data patients deviated significantly on HVLT (direct recall, delayed recall, recognition true positives), TMT (A, B and B/A), BNT and CF (p<0.05) which was not affected by hemispheric localization (left/right) or tumor grade (III/IV). HVLT delayed recall was significantly worse in patients with >12 years survival compared to patients with <12 years survival. Average QoL rating in patients was 75%, proxy’s evaluation about patients’ QoL was similar. Moderate correlations (p<0.05) were found between impaired scores on TMT and CF and C30 cognition subscale and between impaired scores on CF, HVLT delayed recall and BNT and BN20 language subscale. At individual level only one patient had intact scores on all administered tests. Other patients had mild impairments on 1–5 subtests and severe impairment on 1–8 subtests. Five out of 14 (36%) proxies reported a great level of caregiver strain on CSI. CONCLUSION Most LTS suffer from cognitive impairments. Despite worse prognosis and cognitive impairments, at group level patients report relatively intact QoL, which is supported by their proxies. However, at the individual level severity of impairments is variable and high caregiver strain is reported in one-third of the proxies. Objective cognitive functioning was only modestly associated with subjective experience in patients. A patient-tailored approach is recommended to investigate individual impairments and needs for rehabilitation and support for patients and also for their carers.