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May 29, 2026Journal of Clinical Oncology0 citations

Assessing loneliness in glioblastoma patients and caregivers using a nationwide survey.

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JEJacob EllenQOQuinn T. OstromFIFabio M. Iwamoto

Key Points

  • The aim is to assess the prevalence of loneliness among glioblastoma patients and their caregivers.
  • Nationwide survey conducted via OurBrainBank from February to September 2024.
  • Loneliness measured using the UCLA Loneliness Scale among GBM patients, current caregivers, and bereaved caregivers.
  • Multivariable linear and logistic regression used to analyze associations with caregiver status, race, and financial difficulties.
  • 52.0% of respondents reported loneliness, with caregivers showing higher rates (57.4%) compared to patients (33.9%).
  • Caregivers had nearly threefold higher odds of loneliness (OR 2.97, 95% CI 1.91–4.67).
  • Non-white respondents had significantly higher odds of loneliness (OR 4.00, p = 0.01) and elevated UCLA scores.

Abstract

12097 Background: Loneliness is associated with poorer health outcomes and quality of life in cancer patients, yet its prevalence in the glioblastoma (GBM) population remains understudied. GBM’s rapid progression and intensive treatment demands affect both patients and caregivers, but the burden of loneliness in these groups is unknown. We conducted a nationwide survey that assessed loneliness prevalence within the GBM community. Methods: OurBrainBank, a patient-led GBM nonprofit, distributed a HIPAA-compliant survey from February to September 2024 to GBM patients, current caregivers, and caregivers bereaved within 12 months. Loneliness was measured using the validated 3-item UCLA Loneliness Scale (range 3–9), with scores ≥6 indicating loneliness. Multivariable linear and logistic regression examined associations between caregiver status, race (white vs non-white), and financial difficulties in the past year and loneliness, adjusting for age, gender, and urban vs rural residence. Results: Among 525 respondents (404 caregivers, 121 patients), median age at diagnosis was 59 years. Overall, 52.0% (273/525) met criteria for loneliness, and the median UCLA score of the sample was 6.0. Caregivers reported higher loneliness than patients: 57.4% (232/404) vs 33.9% (41/121) were lonely, with mean UCLA scores of 5.88 (SD 1.90) versus 4.78 (SD 1.81). In adjusted models, caregivers had nearly threefold higher odds of loneliness (OR 2.97, 95% CI 1.91–4.67) and UCLA scores 1.22 points higher on average compared to GBM patients (95% CI 0.83–1.61; both p < 0.001). Financial difficulty in the last year (29% of sample) was similarly associated with greater loneliness (OR = 1.85 for loneliness, p = 0.002; 0.68-point higher average UCLA scores, 95% CI 0.32-1.05, p < 0.001). Finally, non-white respondents (12% of the sample) had higher odds of high loneliness compared to white respondents (OR = 4.00, p = 0.01) and had a 0.59 point higher UCLA score on average (p = 0.03). Conclusions: In this nationwide survey, GBM caregivers experienced substantially greater loneliness than patients themselves, and loneliness was also concentrated among those facing financial hardship and among non-white respondents. These findings highlight an underrecognized psychosocial burden and support integrating caregiver-focused and equity-oriented interventions into GBM care.

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Cite This Study

Ellen et al. (2026) studied this question.

synapsesocial.com/papers/6a192ee7fab5b468c44182d9https://doi.org/10.1200/jco.2026.44.16_suppl.12097
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Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 1QOL-35. Disparities in Glioblastoma Care: A National Survey on Access to Trials, Testing, and Informed Decision-Making2025
  2. 2Protective factors supporting caregiver well-being in glioblastoma.2026
  3. 3Caregiver professional employment and its impact on glioblastoma patient survival: Results from two prospective studies.2026
  4. 4Caregivers' Perspective and Burden of the End-of-Life Phase of Patients with Glioblastoma: A Multicenter Retrospective Study2024 · 7 citations
  5. 5Abstract B043: The caregiver burden of patients with Glioblastoma multiforme (GBM) and feeling of regret for treatment decisions associated with GBM standard of care using qualitative analysis2024