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• W2978633224 abstract "Abstract Background 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. Methods 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. Results 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  Table . 1680P HRQoL per cluster QLQ-C30 (mean + SD) Total n = 115 Cluster A low n = 31 (27%) Cluster B intermediate n = 46 (40%) Cluster C high n = 38 (33%) p-value Summary score 82 ± 16 98 ± 3 86 ± 7 64 ± 14 Functioning Physical 86 ± 19 98 ± 5 92 ± 12 68 ± 21 Role 81 ± 28 99 ± 4 84 ± 22 61 ± 33 Emotional 75 ± 23 91 ± 13 73 ± 23 64 ± 21 Cognitive 82 ± 20 94 ± 10 85 ± 18 69 ± 22 Social 76 ± 30 97 ± 12 85 ± 18 47 ± 30 Global health 74 ± 21 92 ± 8 76 ± 18 56 ± 19 a: cluster A vs B, b: cluster A vs C, c: cluster B vs C Conclusions 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 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." @default.
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• W2978633224 date "2019-10-01" @default.
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• W2978633224 title "A global patient-driven Facebook study in a very rare sarcoma: Health-related quality of life in epithelioid hemangioendothelioma (EHE) patients" @default.
• W2978633224 doi "https://doi.org/10.1093/annonc/mdz283.013" @default.
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