Health-related quality of life and symptom burden of epithelioid hemangioendothelioma patients: a global patient-driven Facebook study in a very rare malignancy.

Conclusion: For the first time, we studied HRQoL in a large international cohort of ultra-rare cancer patients with distinct clinical characteristics, enabled by collaboration with patients and use of social media. We showed a considerable number of EHE patients were highly symptomatic, with a significant impact on HRQoL and psychological distress.
PMID: 32476528 [PubMed - as supplied by publisher]

Source: Acta Oncologica - May 31, 2020 Category: Cancer & Oncology Authors: Weidema ME, Husson O, van der Graaf WTA, Leonard H, de Rooij BH, Hartle DeYoung L, Desar IME, van de Poll-Franse LV Tags: Acta Oncol Source Type: research