Online patient and caregiver conversations focused on neuroendocrine neoplasms (NENs): A global thematic analysis.

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Authors: Udhayvir Singh Grewal, Jamie Doggett, Tao Xu, Mats van Rooij, Matthew Gao, Lisa Yen, Josh A. Mailman, Po Hien Ear, Chandrikha Chandrasekharan, Seth Jason Concors, Julie Hallet, Andrew M. Bellizzi
+3 more E M Saiz Lou, Michael A. O’Rorke, Daniel M. Halperin
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Abstract

645 Background: NENs are a heterogeneous group of malignancies with complex care needs. Patients and caregivers increasingly use social media to share experiences, exchange information, and seek support, yet large-scale systematic analyses of public NEN discourse remain lacking. Methods: We conducted a computational analysis of publicly available social media posts by patients and caregivers (April 2022–March 2025) using Talkwalker, an NLP-enabled listening platform. English-language posts from Bluesky, Instagram, YouTube, and X were analyzed via a two-stage pipeline: rule-based filters (Boolean operators, custom lexicons) identified candidate posts, followed by human-in-the-loop verification of self-identification. Texts were preprocessed (tokenization, normalization, noise reduction) and thematically classified. Effect sizes were quantified with standardized mean differences (SMDs), and between-group significance was tested. A p-value

Fields of Study & Subjects

Social Media in Health Education Health Literacy and Information Accessibility Cancer survivorship and care

Publication details

Journal / source
Journal of Clinical Oncology
Volume
44
Issue
2_suppl
Pages
645–645
Publication date
10 January 2026
Language
EN