A global patient-driven Facebook study in a very rare sarcoma: Health-related quality of life in epithelioid hemangioendothelioma (EHE) patients

Abstract

Background: EHE is a vascular sarcoma with an incidence of < 0.001) (Table). These patients suffered mostly from pain, insomnia and fatigue and more often had bone/pleural lesions. [Table presented] Conclusion(s): For the first time, we showed that a Facebook patient group enabled HRQoL research in EHE. One third of patients was highly symptomatic and experienced reduced functioning in daily life. Collaboration with patients and the established online PROFILES system facilitated successful recruitment in this ultra-rare sarcoma and offers perspectives for future research. Legal entity responsible for the study: The authors. Funding(s): Has not received any funding. Disclosure: W.T. van der Graaf: Research grant / Funding (institution): Bayer; Research grant / Funding (institution): Novartis. I.M.E. Desar: Research grant / Funding (institution): Novartis. All other authors have declared no conflicts of interest.Copyright © 2019 European Society for Medical Oncology