Background: The purpose of antineoplastic treatment of high-grade glioma (HGG) is to achieve progression-free survival with delayed neurological and cognitive deterioration. Health-related quality of life (HRQOL) has become increasingly important next to more traditional outcome measures such as progression-free survival. However, the clinical outcome of long-term, HGG survivors and their caregivers' quality of life is poorly understood.
Objective: This study aims to address HRQOL and perspectives on the daily life experiences of long-term survivors (LTS) with HGG and their caregivers.
Methods: This mixed-methods study applies a convergent design using identical sampling. Separate telephone interviews with patients diagnosed for more than 3 years and their caregivers were conducted. Patients filled out self-reported questionnaires; the Hospital Anxiety and Depression Scale, the Functional Assessment of Cancer Therapy (FACT), General and Brain (FACT-Br), and the Leisure Time Physical Activity Questionnaire.
Results: Three themes shared by patients and their caregivers were identified: searching for meaningful activities, selecting information that enhances self-management strategies and protection for safety reasons. Ten per cent showed moderate depressive symptoms, which is lower compared with the newly diagnosed. The HRQOL scores seem to be rated higher than the normative sample. The FACT-Br total score indicated that a previously identified significant increase in the emotional well-being of 1-year survivors was the same or improved. A central finding is that the LTS expressed frustration and sadness due to their reduced ability to manage work and daily life activities. Caregivers are challenged throughout the entire trajectory, and patient safety issues are a key concern for them.
Conclusions: The LTS desire participation in satisfying, meaningful activities that consider their cognitive and physical capacities. Advance care planning must be a key component in future research, as discussing life strategies can enhance positive beliefs, which are apparently imperative to their well-being.
Trial registration number: Clinical Trial.gov: NCT02965144.
Keywords: caregivers; health-related quality of life; high-grade glioma; long-term survivors; mixed-methods.
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