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

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 <0.05 was considered statistically significant. Results: Of 8,961 available posts from 1,088 authors, 87% (n=7,793) were from patients and 13% (n=1,168) from caregivers. Major themes were treatment (23.6%), survivorship (15.2%), and diagnosis (14.4%) for patients, and treatment (24.3%), diagnosis (28.6%), and clinical trials (16%) for caregivers. Compared to caregivers, patients’ conversations focused significantly less on research/clinical trials (SMD -0.21, p<0.001) and diagnosis (-0.24, p<0.001) and more on symptoms (SMD=0.13, p<0.001), finances (0.12, p=0.004), insurance (0.25, p<0.001) and fear/anxiety (0.15, p<0.001). Among patients, females were less likely to focus on treatment -0.10, p<0.001) and insurance-related discussions (-0.06, p=0.03) and more likely to discuss financial issues (0.06, p=0.02) compared to males. Younger patients (18-44 years of age) were less likely to discuss research/clinical trials (-0.21, p<0.001) compared to older patients. U.S.-based patients were significantly less likely to discuss research/clinical trials (-0.22, p<0.001), travel (-0.07, p=0.02), policy (-0.14, p<0.001), end-of-life care (-0.286, p<0.001) and diagnosis (-0.07, p=0.03) , and more likely to discuss treatment (0.15, p<0.001) and insurance-related issues (0.16, p<0.001) compared to their counterparts overseas. Conclusions: We identified thematic priorities in public online discourse by patients with NENs and their caregivers, with unmet needs in financial, insurance, and psychosocial support. Geographic differences existed in focus on treatment, research, policy, among others. This work provides the first direct insight at scale from patients and care partners to inform patient-centered care and interventions in NENs.