Are Social Media Platforms an Effective Forum for Engaging Early-Onset Cancer Survivors? Insights From X (Formerly Twitter).

BACKGROUND

Rates of early-onset pancreatic cancer (EOPC) and early-onset colorectal cancer (EOCRC) are rising globally. Although research and clinical guidelines have sought to address the psychosocial and supportive care needs of people with colorectal and pancreatic cancers, these efforts have focused largely on older adults, meaning the experiences of individuals with EOPC and EOCRC may be poorly understood. Social media offers a source of real-time, first-hand narratives that may help address this gap. This study analyzed posts on X (formerly Twitter) to explore the lived experiences and needs of people with EOPC and EOCRC to inform more age-appropriate, person-centered care.

METHODS

Posts containing keywords relating to EOPC and EOCRC, shared between 2023 and 2025, were extracted. Of 7441 posts retrieved, approximately 40% were categorized automatically using predefined keywords, with the remainder manually coded. Automated coding demonstrated substantial agreement with manual coding (Cohen's κ = 0.717).

RESULTS

Most posts related to "academic and clinical" content (66.1%) or "medical advice and discussion" (13.5%). Only 11 posts (0.2%) described patient experiences, all relating to EOCRC, with none reflecting lived experiences of EOPC. These posts highlighted rising EOCRC incidence, late-stage diagnoses, advocacy for screening, survivorship themes, and peer support.

CONCLUSION

X posts by people with early-onset cancers were scarce, whereas clinician- and researcher- posts dominated. This imbalance on X suggests a one-directional, paternalistic model of healthcare communication on this platform that contrasts with person-centered principles. Future research should explore alternative platforms and digital strategies to better engage younger cancer populations and support more collaborative communication.