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BACKGROUND The needs of people with brain tumours are unique, particularly in terms of neurocognitive impacts, and their subsequent effects on primary caregivers. Evidence suggests that those with brain tumours and their primary caregivers experience unmet needs in the clinical care setting. MATERIAL AND METHODS Semi-structured interviews with people with glioma and their caregivers, in the UK, with the aim to understand their priorities and lived experience of glioma, its treatment and treatment aims. Interviews formed part of a study to identify a core outcome set (COS) for glioma interventional trials (COBra study). The interview data were further analysed to identify concepts of importance to people with glioma and their caregivers within the clinical care setting. RESULTS Nineteen people with glioma and seven caregivers were interviewed (n=6 glioblastoma, n=4 astrocytoma, n=4 anaplastic astrocytoma/ oligodendroglioma, n=2 oligodendroglioma n=1 PXA tumour, n=1 ‘oligodendroglioma grade 3’ and n=1 ‘glioma grade 3’). Themes identified related to unmet needs and frustrations around communication, access to/need for support, caregiver impacts, neurocognitive symptoms and impacts to activities of daily living. Our findings also indicate the impact of treatment side effects, and how patients and caregivers negotiated tolerability in terms of trade-offs across the spectrum of glioma. Additionally, it was perceived that glioma grade did not correlate with symptom burden, and for those with longer survival, issues relating to late side effects were prominent - highlighting significant unmet needs across the spectrum of disease. Most described the lack of support and being left to deal with many of the unique burdens of the disease alone. Caregivers needs corresponded to the particular challenges experienced by their loved one, including late and longer-term effects of the disease, particularly neurocognitive impacts and the subsequent effects to patients’ activities of da

AIMS Glioma, the most common primary brain tumour, has variable survival rates. Existing evidence describes detriment to quality of life from persistent symptoms/side effects, functional loss and feelings of disconnection, particularly in glioblastoma; however, there remains limited focus on the experience of longer-term survivors. This study aimed to ascertain the lived experience of people with glioma and their caregivers, part of a larger study identifying outcomes for a core outcome set for use in glioma trials (COBra study). METHOD Semi-structured interviews with UK glioma patients, or patient-caregiver dyads, analysed using Thematic Analysis. RESULTS Nineteen interviews were undertaken. Patients and caregivers described living with uncertainty long after diagnosis and treatment, including prognostic uncertainty and anxiety surrounding recurrence and worsening symptoms. Patients described an inability to plan long-term, struggling to return to normal activities, either due to progressive tumour symptoms, and/or treatment side effects. Long-term physical and psychological side effects were highly impactful; patients felt left alone to cope, with support following treatment dropping off rapidly. Patients/caregivers sought self-directed ways to cope, focusing on routine and achieving some normality. However, the physical and neurological effects of glioma and its treatment affected all aspects of daily life and social interactions, impacting on sense of wellbeing and quality of life. CONCLUSION People with glioma, and their caregivers, struggle with loss of normality and living with uncertainty long after diagnosis. They proactively engage in self-directed approaches towards mitigating these effects, but experience gaps in support after treatment finishes. Clinical follow up should target these aspects of assessment and intervention.

Background Gliomas are the commonest form of primary brain tumour, accounting for 80% of malignant brain tumours. Gliomas represent a heterogeneous group of cancers with variable outcomes, traditionally graded from I to IV (least to most aggressive). The poor prognosis of some glioma patients and high symptom burden has led to a growing emphasis on their quality of survival. Maintaining cognitive function, physical function and other health-related quality of life aspects throughout the disease trajectory are key considerations, particularly for patients with aggressive forms of glioma. It is therefore important that glioma intervention studies collect data aligned with patient priorities that enables assessment of the net clinical benefit of treatments and facilitates informed decision-making. In particular, and of increasing recognition, is the importance of monitoring the incidence of adverse events during and after the course of an intervention, and understanding their impact upon patients, and patients’ own assessment of, tolerability. Material and Methods A trial registry review, a systematic review of the qualitative literature and semi-structured interviews with patients and caregivers were undertaken. Outcomes were extracted from these sources to formulate a longlist during the development of a core outcome set for glioma interventional trials (the COBra study). Results The registry review (n=91), systematic review (n=21) and semi-structured interviews (n=19) identified many important outcomes and concepts, one of which was tolerability. Tolerability, adverse events, toxicity or safety was reported to be collected as an outcome in 46 trials. Outcomes related to tolerability were identified from 7 articles included in the systematic review. Themes related to tolerability emerged from the qualitative interviews. These included tolerability of side effects of treatment; trade-offs of side effects versus potential benefits in deciding on, and willingness to, un