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Understanding the holistic needs of people living with glioma and their caregivers: A thematic analysis of the semi-structured interviews for the COBRA study

Baddeley, Elin, Sivell, S., Retzer, A., Nelson, A., Bulbeck, H., Seddon, K., Grant, R., Adams, R., Watts, C., Aiyegbusi, O., Kearns, P., Dirven, L., Calvert, M. and Byrne, A. 2023. Understanding the holistic needs of people living with glioma and their caregivers: A thematic analysis of the semi-structured interviews for the COBRA study. Presented at: European Association of Neuro-Oncology (EANO), Rotterdam, 21-24 September 2023. Neuro-Oncology. , vol.25 (S2) 10.1093/neuonc/noad137.194

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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 daily living as a result. Psychosocial impacts on caregivers were prevalent, reported by caregivers and also reported by patients interviewed with no caregiver present. CONCLUSION The qualitative data highlights the unmet needs of people with glioma and their caregivers, which are complex, unique and affect all those across the spectrum of glioma. As such, there is a need for a consistent and appropriate assessment of needs for patients and their caregivers in clinical practice, which need to incorporate the key concepts, such as communication, tolerability and support. These findings support further investigation into a holistic needs assessment for those with glioma.

Item Type: Conference or Workshop Item (Poster)
Date Type: Publication
Status: Published
Schools: Medicine
Marie Curie Palliative Care Research Centre (MCPCRC)
Last Modified: 08 Jan 2024 14:30

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