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03-02-2025 | Glioblastoma | Research

Missing the message to brain tumor patients: a 2023 twitter analysis among patients, informal caregivers, and healthcare professionals in glioblastoma multiforme

Authors: Jay A. Jani, David Cowan, Lionel Ouonkap, Daniel Adesina, Tianwen Ma, Shumeng Chen, Salman Aldakhil, Kimberly B. Hoang

Published in: Journal of Neuro-Oncology

Abstract

Purpose

Social media platforms, particularly Twitter (X), play an important role in healthcare communication by sharing information and personal disease experiences. We investigated glioblastoma multiforme (GBM) posting behaviors on Twitter by comparing patient and informal caregiver tweets to healthcare professional tweets.

Methods

Using Keyhole, a third-party analytics tool, we analyzed 1,639 tweets containing the keyword “#glioblastoma” from January 1 to December 31, 2023. Users were categorized as patients, informal caregivers, or healthcare professionals. We employed Generalized Estimating Equation models and multinomial distributions to compare sentiment, thematic, and frequency engagement patterns across stakeholder groups.

Results

Informal caregivers produced the slight majority of tweets (51.6%), followed by healthcare professionals (39.0%). Informal caregivers expressed significantly more negative sentiments (relative to neutral ones) than healthcare professionals (p < 0.001). Thematic analysis revealed that patients (p < 0.001) and informal caregivers (p < 0.001) engaged in more emotional support than healthcare professionals. Healthcare professionals were more likely than patients (p < 0.001) and informal caregivers (p < 0.001) to self-promote. Patients (p < 0.001) and informal caregivers (p < 0.001) tweeted more on survival/mortality than healthcare professionals. Additionally, patients (p < 0.001) and informal caregivers (p < 0.001) had a higher average posting frequency per user than healthcare professionals.

Conclusion

Our findings indicate that GBM patients and informal caregivers were more likely to discuss emotional aspects of GBM care, while healthcare professionals had more informational and professional motives. Healthcare professionals who address these emotional, social, and financial communication disconnects can make their social media engagement more meaningful to patients who are often at least one of the primary targets of these accounts.

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Title: Missing the message to brain tumor patients: a 2023 twitter analysis among patients, informal caregivers, and healthcare professionals in glioblastoma multiforme
Authors: Jay A. Jani
David Cowan
Lionel Ouonkap
Daniel Adesina
Tianwen Ma
Shumeng Chen
Salman Aldakhil
Kimberly B. Hoang
Publication date: 03-02-2025
Publisher: Springer US
Keywords: Glioblastoma
Glioblastoma
Glioblastoma
Published in: Journal of Neuro-Oncology
Print ISSN: 0167-594X
Electronic ISSN: 1573-7373
DOI: https://doi.org/10.1007/s11060-025-04948-8

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