ArticleNeuro-oncology practice2020
Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats.
Article in Neuro-oncology practice, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07628647 (Pilot Study of the Living Well With Brain Cancer Intervention), which is not on this map. Cited by 12 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Pilot Study of the Living Well With Brain Cancer Intervention
Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it, 18 citations in OpenAlex.
- Social media for palliative and end-of-life care research: a systematic review.BMJ supportive & palliative care · 2024Pooled it
- Community perspectives on the return of research results and ownership of data and specimens for brain tumor genomic research.SSM. Qualitative research in health · 2026Article
- Engagement Methods in Brain Tumor Genomic Research: Multimethod Comparative Study.Journal of participatory medicine · 2025Article
- Unscheduled hospitalization as a potential trigger for specialist palliative care referral in patients with high grade glioma: a retrospective analysis in a tertiary hospital.Journal of neuro-oncology · 2025Article
- Review
- Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach.Neuro-oncology practice · 2024Article
- Social Media and Professional Development for Oncology Professionals.JCO oncology practice · 2022Review
- An Examination of Patients and Caregivers on Reddit Navigating Brain Cancer: Content Analysis of the Brain Tumor Subreddit.JMIR cancer · 2022Article
- Quality aspects of hospital-based physiotherapy from the perspective of key stakeholders: a qualitative study.BMJ open quality · 2022Article
- Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review.Journal of medical Internet research · 2022Article
- Social Media Perceptions of Legacy-Making: A Qualitative Analysis.Palliative medicine reports · 2020Article
- Communicating Care in Digital Social Spaces: Mixed-method Analysis of Influence of Social Media on Palliative Care.Indian journal of palliative careReview
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 7 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundResearch is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe the use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients.
methodsThe Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients. The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes.
resultsAnalysis showed QoL for brain tumor patients and care partners includes psychosocial, physical, and cognitive concerns. Distressing concerns included behavioral changes, grief over loss of identity, changes in relationships, depression, and anxiety. Patients appreciated when providers discussed QoL early in treatment, and emphasized the need for care partner support. Communication about QoL and palliative care rely on relationships to meet evolving patient needs.
conclusionsIn addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement using Twitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.