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Cited by 6Cancer survivorship and careGlioma Diagnosis and TreatmentCancer-related cognitive impairment studies

Well-being and coping: key aspects of unmet need of people living with glioma

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Baddeley, Elin, Sivell, Stephanie, Retzer, Ameeta, Nelson, Annmarie, Bulbeck, Helen, Seddon, Kathy, Grant, Robin, Adams, Richard +4 more·2025·Neuro-Oncology Practice
DOI 10.1093/nop/npae127PMC PMC12137209
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Abstract

Background: The challenges and needs of people with brain tumors 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 United Kingdom, as part of a study exploring core outcomes for use across glioma trials. Interviews were analyzed using thematic analysis. Results: Nineteen people with glioma and seven caregivers were interviewed. Three major themes were identified: (1) Well-being, 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 the 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.

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  • Caregiving in glioma differs from many other cancer types because disease often produces early neuro-oncological symptoms in patients that can disrupt personality, behaviour, communication, and functional independence.

    “Caregiving in glioma differs from many other cancer types because disease often produces early neuro-oncological symptoms in patients that can disrupt personality, behaviour, communication, and functional independence.5”

    From Caregiver burden, quality of life, and psychosocial outcomes among informal caregivers of patients with glioma: A systematic review and meta-analysis (2026) · cites this paper as [5]

    The Introduction (page not specified) says glioma care needs differ from those of other cancers particularly because of neurocognitive impacts. Results, Themes 1 and 3 (pages not specified), describe effects on speech, executive functioning, mobility, independence, and caregivers. Our copy does not establish that these symptoms often arise early, and it does not clearly describe personality or behavioural disruption as such. (LLM, conf=0.86)

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Authors
Baddeley, E., Sivell, S., Retzer, A., Nelson, A., Bulbeck, H., Seddon, K., Grant, R., Adams, R., Watts, C., Aiyegbusi, O. L., Calvert, M., & Byrne, A.
Affiliations
  • Cardiff University (GB)
  • National Institute for Health and Care Research (GB)
  • Brainstrust - The Brain Cancer People , Cowes ,
  • Edinburgh Royal Infirmary (GB)
  • University of Birmingham (GB)
Corresponding author
Baddeley, Elin
ORCID
Venue
Neuro-Oncology Practice
Publisher
Oxford University Press (OUP)
Published
2025-01-09
Volume
12
Issue
3
Pages
413-425
ISSN
  • 2054-2577 (ISSN-L)
  • 2054-2585
DOI
10.1093/nop/npae127
PMC
PMC12137209
OpenAlex
W4406212562
Cited by
6
References
1
Citations by year
2026: 3 · 2025: 3
FWCI
2.48
Type
journal article
Language
en
Open access
Licence
Locations
  • Neuro-Oncology Practice (publishedVersion, cc-by-nc)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by-nc)
  • PubMed Central (publishedVersion, cc-by-nc)
  • PubMed (publishedVersion)
  • ORCA Online Research @Cardiff (Cardiff University) (acceptedVersion)
  • University of Birmingham Research Portal (University of Birmingham) (submittedVersion, cc-by-nc)
Funders
Brain Tumor Charity (GN-000704)
Topics
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Health Sciences › Medicine › Genetics › Glioma Diagnosis and Treatment
  • Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cancer-related cognitive impairment studies
Keywords
glioma, unmet needs, well-being, coping, caregivers, prognostic uncertainty, long-term adjustment, follow-up support, core outcomes, patient experience

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