Abstract

Abstract BACKGROUND Approximately 2000 people are diagnosed with brain cancer in Australia each year. Compared to glioblastoma patients, the IDH-mutated high-grade glioma (IDHmHGG) is a more favourable diagnosis; better prognosis and survival outcomes. Coupled with improved treatments, the IDHmHGG cohort is living longer which means treatment side effects (eg. fatigue, cognitive deficits, physical limitations etc.) can significantly impact their quality of life in the survivorship years. Hence there is a need to identify and determine the survivorship issues most pertinent for the IDHmHGG cohort. MATERIAL AND METHODS A mixed- METHODS cross-sectional study was conducted to investigate the relationship between socio-demographic, clinical factors and quality of life in the IDHmHGG cohort. Qualitative data collection consisted of a neuro-oncology clinician focus group (n=11) regarding survivorship issues and was contrasted with semi-structured patient interviews (n=27). Quantitative data collection (n=41) involved socio-demographic questions, the Functional Assessment of Cancer Therapy - Brain (FACT-Br) tool and The Hospital Anxiety and Depression Scale (HADS). RESULTS The results indicate that marital status, employment status, and treatment complications are strongly associated with quality of life in IDHmHGG patients. Being single and unemployed is associated with lower quality of life (p<0.05). Similarly, our findings show that psychological distress, specifically the presence of anxiety and depressive symptoms, is a major factor that can negatively impact the QoL in an IDHmHGG cohort. The order of ranking between clinician and patient identified issues only matched for physical limitations (ranked 3rd). Although not matched in ranking, both groups identified cognitive function, employment, social function, isolation and mental health as commonly experienced in the survivorship years. CONCLUSION This study highlights the importance of considering socio-demographic and clinical factors in the care and support of brain cancer patients. The most important finding of this study was that being single and unemployed negatively predicted QoL. Additionally, it is notable that our results show a discrepancy between clinician identified issues and patient identified issues. This finding suggests that in order to deliver patient-centred and meaningful care, there is a need to incorporate a more patient focused perspective. Future survivorship models of care for the IDHmHGG cohort should be co-designed with patients.

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