Wellbeing and coping: key aspects of unmet need of people living with glioma

Baddeley, Elin, Sivell, Stephanie ORCID: https://orcid.org/0000-0003-0253-1860, Retzer, Ameeta, Nelson, Annmarie ORCID: https://orcid.org/0000-0002-6075-8425, Bulbeck, Helen, Seddon, Katthy, Grant, Robin, Adams, Richard ORCID: https://orcid.org/0000-0003-3915-7243, Watts, Colin, Aiyegbusi, Olalekan Lee, Calvert, Melanie and Byrne, Anthony 2025. Wellbeing and coping: key aspects of unmet need of people living with glioma. Neuro Oncology Practice 10.1093/nop/npae127

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Abstract

Background The challenges and needs of people with brain tumours are complex and unique, particularly - but not limited to - the neurocognitive impacts they experience. These effects are subsequently impactful on their primary caregivers. Evidence suggests people with glioma and their caregivers experience a range of unmet needs in the clinical care setting. Methods Semi-structured interviews with people across the spectrum of glioma, and their caregivers in the UK, as part of a study exploring core outcomes for use across glioma trials. Interviews were analysed using thematic analysis. Results Nineteen people with glioma and seven caregivers interviewed. Three major themes were identified: 1. Wellbeing, support and coping; 2. Communication and care; and 3. Impact on caregivers. People with glioma and their caregivers experience uncertainty, and progressive impacts long after diagnosis. People with glioma across the spectrum of the disease have many challenges in common including long-term adjustments, impacts of glioma and its treatment, and communication/information gaps including prognostic uncertainty. These impacts also affect caregivers. While most patients and caregivers engaged in self-directed approaches to mitigate the impacts of glioma, gaps in follow-up support for lasting effects were a major source of frustration, impacting on ability to cope and manage the effects of glioma. Conclusions These interviews highlight unmet needs of people with glioma and their caregivers. A consistent, systematic and focused approach to assessing the needs of glioma patients and their caregivers in the clinical setting and support for long term adjustment is required.

Item Type:	Article
Date Type:	Published Online
Status:	In Press
Schools:	Centre for Trials Research (CNTRR) Marie Curie Palliative Care Research Centre (MCPCRC) Medicine
Publisher:	Oxford University Press
ISSN:	2054-2577
Funders:	Brain Tumour Charity
Date of First Compliant Deposit:	14 January 2025
Date of Acceptance:	9 January 2025
Last Modified:	15 Jan 2025 16:00
URI:	https://orca.cardiff.ac.uk/id/eprint/175259

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