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Poster Display session 1

3357 - A global patient-driven Facebook study in a very rare sarcoma: Health-related quality of life in Epithelioid Hemangioendothelioma (EHE) patients


28 Sep 2019


Poster Display session 1


Tumour Site



Marije Weidema


Annals of Oncology (2019) 30 (suppl_5): v683-v709. 10.1093/annonc/mdz283


M.E. Weidema1, O. Husson2, W.T. van der Graaf3, H. Leonard4, B.H. de Rooij5, L. Hartle De Young6, I.M.E. Desar1, L.V. van de Poll-Franse7

Author affiliations

  • 1 Medical Oncology, Radboud University Medical Center, 6525 GA - Nijmegen/NL
  • 2 Psychosocial Research And Epidemiology, Netherlands Cancer Institute/Antoni van Leeuwenhoek hospital (NKI-AVL), 1066 CX - Amsterdam/NL
  • 3 Medical Oncology, Netherlands Cancer Institue - Antoni van Leeuwenhoek Hospital, Amsterdam/NL
  • 4 Board Of Trustees, EHE Rare Cancer Charity, Surrey/GB
  • 5 Research & Development, The Netherlands Comprehensive Cancer Organization, Utrecht/NL
  • 6 Patient Liaison Services, EHE Foundation, Anchorage/US
  • 7 Department Of Psychosocial Studies And Epidemiology, Netherlands Cancer Institute - Antoni van Leeuwenhoek Hospital, Amsterdam/NL


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Abstract 3357


EHE is a vascular sarcoma with an incidence of ≤ 1 per 1 million/year, and an unpredictable clinical course with significant symptom burden. Recruiting EHE patients for studies is difficult and health-related quality of life (HRQoL) in these patients is unknown. We aimed to study the impact of EHE symptom burden on HRQoL.


The study was initiated after EHE patients’ foundations approached our research group to study HRQoL. After ethical approval, patients were recruited from the global EHE Facebook group from May-October 2018. Data were collected using the unique, well-established online PROFILES (Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship) registry. Latent class cluster analysis was performed to identify groups based on 10 frequently reported symptoms. Differences in HRQoL (EORTC-QLQ-C30) between clusters were examined.


Of 138 patients who registered in PROFILES, 115 (83%) completed the survey. Three clusters of EHE patients were identified with low (A) intermediate (B) and high (C) symptom burden. Highly symptomatic patients had clinically relevant lower scores on HRQoL compared to the other two groups (p < 0.001) (Table). These patients suffered mostly from pain, insomnia and fatigue and more often had bone/pleural lesions.Table:

1680P HRQoL per cluster

QLQ-C30 (mean + SD)Total n = 115Cluster A low n = 31 (27%)Cluster B intermediate n = 46 (40%)Cluster C high n = 38 (33%)p-value
Summary score82 ± 1698 ± 386 ± 764 ± 14<0.001a,b,c
Physical86 ± 1998 ± 592 ± 1268 ± 21<0.001b,c
Role81 ± 2899 ± 484 ± 2261 ± 33<0.001a,b,c
Emotional75 ± 2391 ± 1373 ± 2364 ± 21<0.001a,b
Cognitive82 ± 2094 ± 1085 ± 1869 ± 22<0.001b,c
Social76 ± 3097 ± 1285 ± 1847 ± 30<0.001a,b,c
Global health74 ± 2192 ± 876 ± 1856 ± 19<0.001a,b,c

a: cluster A vs B, b: cluster A vs C, c: cluster B vs C


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.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

The authors.


Has not received any funding.


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.

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