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
- high-grade glioma
- long-term survivors
- health-related quality of life
Data availability statement
No data are available.
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Contributors KP: planning, data collection, analysis, primary manuscript development and revision, guarantor of overall content, development of tables and figures, submitted the study. KG: planning, recruiting and analysis, manuscript revision. IJC: statistical analysis and development of tables, manuscript revision. HSP: planning and manuscript revision. KP, IJC, KG and HSP contributed to the conception and provided substantial scientific contribution and critical revision of important intellectual content.
Funding The study is supported by grants from the Novo Nordisk Foundation for Clinical Nursing Research, file no. NNF15OC0017346.
Competing interests None declared.
Ethical approval The Danish Data Protection Agency (2012-58-0004) and the Scientific Ethics Review Committee of the Capital Region of Denmark (H-16035446) granted ethical approval. Written informed consent was obtained from all study participants.
Provenance and peer review Not commissioned; externally peer reviewed.
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