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

Authors

  • Marije E. Weidema Department of Medical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands
  • Olga Husson Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands;  Division of Clinical Studies, Institute of Cancer Research/Royal Marsden Hospital, London, UK
  • Winette T. A. van der Graaf Department of Medical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands;  Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands
  • Hugh Leonard EHE Rare Cancer Charity, Surrey, UK
  • Belle H. de Rooij Netherlands Comprehensive Cancer Organization, Utrecht, The Netherlands;  CoRPS – Center of Research on Psychology in Somatic diseases/Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands
  • Lisa Hartle DeYoung EHE Foundation, Anchorage, Alaska, USA
  • Ingrid M. E. Desar Department of Medical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands
  • Lonneke V. van de Poll-Franse Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands;  Netherlands Comprehensive Cancer Organization, Utrecht, The Netherlands;  CoRPS – Center of Research on Psychology in Somatic diseases/Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands

DOI:

https://doi.org/10.1080/0284186X.2020.1766696

Abstract

Purpose: Epithelioid hemangioendothelioma (EHE) is an ultra-rare vascular sarcoma with unique clinical features. EHE is characterized by an unpredictable, often protracted, clinical course and highly variable clinical presentation. Due to difficulty recruiting ultra-rare cancer patients, health-related quality of life (HRQoL) of EHE patients has not yet been studied. The aim of this study was to assess EHE symptom burden and its impact on HRQoL and psychological distress.

Methods: The study was initiated after EHE patients’ foundations approached our research group to study HRQoL. Patients were recruited from the international EHE Facebook group from May through October 2018. Data were collected using the online PROFILES registry. Latent class cluster analysis was performed to identify groups based on frequently reported symptoms. Differences in HRQoL (EORTC-QLQ-C30) and psychological distress (Hospital Anxiety and Depression Scale) between symptom-based clusters were examined.

Results: Among 115 EHE patients from 20 countries, three clusters were identified, with low-, intermediate- and high-symptom burden, respectively. Highly symptomatic patients (33%) had clinically relevantly lower scores on HRQoL compared to the other two groups (p < 0.001). These patients suffered mostly from pain, insomnia and fatigue. Symptom burden significantly correlated with reduced daily functioning and high levels of psychological distress. Only for highly symptomatic patients, HRQoL and symptom levels were worse compared to healthy individuals.

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.

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Published

2020-08-02

How to Cite

Weidema, M. E., Husson, O., van der Graaf, W. T. A., Leonard, H., de Rooij, B. H., Hartle DeYoung, L., … van de Poll-Franse, L. V. (2020). Health-related quality of life and symptom burden of epithelioid hemangioendothelioma patients: a global patient-driven Facebook study in a very rare malignancy. Acta Oncologica, 59(8), 975–982. https://doi.org/10.1080/0284186X.2020.1766696

Issue

Vol. 59 No. 8 (2020): Acta Oncologica

Section

Articles

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Copyright (c) 2020 Radboud University Medical Center. Published by Informa UK Limited, trading as Taylor & Francis Group

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This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.