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Demographic and clinical characteristics; y = years; * WHO classification 2016 [22]

Demographic and clinical characteristics; y = years; * WHO classification 2016 [22]

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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’ evaluatio...

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... participants gave written informed consent. Table 1 shows the demographic and clinical characteristics of the 21 included patients and 15 caregivers. The tumor was localized in the left hemisphere in 8 patients (38%), the right hemisphere in 12 patients (57%), and multifocal in one patient (5%). ...
Context 2
... analysis showed WHO-grade III (anaplastic astrocytoma/anaplastic oligodendroglioma) in eight patients (38%), and glioblastoma (WHO grade IV) in 13 patients (62%). See Table 1 for further molecular characterization of these tumors. The mean survival at cognitive assessment was 12 years in grade III (range 7-16 years) and eight years in grade IV (range 5-20 years). ...

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Purpose of review To provide up-to-date evidence on patient-reported outcomes (PROs) in neuro-oncology, with a focus on the core constructs of health-related quality of life (HRQoL) and the use of PROs in clinical trials and clinical practice. [Supplemental Digital Content: Video Abstract PROs in Neuro-Oncology.mov] Recent findings PROs are gaining importance in brain tumor research and medical care. For patients with a brain tumor, core PRO constructs are pain, difficulty communicating, perceived cognition, seizures, symptomatic adverse events, physical functioning and role and social functioning, which are assessed through patient-reported outcome measures (PROMs). Initiatives have been taken to improve the reliability and robustness of PRO data, including standardization of items included in clinical trial protocols (the SPIRIT-PRO extension) and formulation of PRO priority objectives for use in clinical trials (the SISAQOL-Innovative Medicines Initiative). In brain tumor patients with cognitive impairment, caregiver-reported outcomes may complement or replace PROs to increase accuracy. The next key challenge will be to widely implement PROs and apply PRO data in clinical practice to benefit patients with brain tumors. Summary PROs are clinically relevant endpoints providing information only known by the patient. Standardization of the use of PROs in clinical trials and wide implementation in clinical practice is needed to improve HRQoL of brain tumor patients.