Abstract 3357
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 < 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 = 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 | <0.001a,b,c |
Functioning | |||||
Physical | 86 ± 19 | 98 ± 5 | 92 ± 12 | 68 ± 21 | <0.001b,c |
Role | 81 ± 28 | 99 ± 4 | 84 ± 22 | 61 ± 33 | <0.001a,b,c |
Emotional | 75 ± 23 | 91 ± 13 | 73 ± 23 | 64 ± 21 | <0.001a,b |
Cognitive | 82 ± 20 | 94 ± 10 | 85 ± 18 | 69 ± 22 | <0.001b,c |
Social | 76 ± 30 | 97 ± 12 | 85 ± 18 | 47 ± 30 | <0.001a,b,c |
Global health | 74 ± 21 | 92 ± 8 | 76 ± 18 | 56 ± 19 | <0.001a,b,c |
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.
Clinical trial identification
Editorial acknowledgement
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.
Resources from the same session
3157 - Efficacy and safety of anlotinib in advanced leiomyosarcoma: Subgroup analysis of a phase IIB trial (ALTER0203)
Presenter: Yihebali Chi
Session: Poster Display session 1
Resources:
Abstract
3710 - The effect of treatment line on the efficacy of Anlotinib hydrochloride in advanced alveolar soft part sarcoma patients
Presenter: Zhiwei Fang
Session: Poster Display session 1
Resources:
Abstract
3184 - Prior exposure to pazopanib (PAZ) did not minor efficacy of regorafenib (REG) in non-adipocytic soft tissue sarcoma patients (pts)
Presenter: Nicolas Penel
Session: Poster Display session 1
Resources:
Abstract
798 - Pexidartinib (Pex) for locally advanced tenosynovial giant cell tumor (TGCT): characterization of hepatic adverse reactions (ARs)
Presenter: Sebastian Bauer
Session: Poster Display session 1
Resources:
Abstract
6117 - VEGFR2 and ITGA polymorphisms as novel pan-sarcoma biomarkers for sensitivity prediction as well as toxicity prevention anti-angiogenesis therapy in pediatric and young adult
Presenter: Qiyuan Bao
Session: Poster Display session 1
Resources:
Abstract
5450 - Reversion of resistance to mTOR inhibitors with the addition of exemestane in patients with malignant PEComa.
Presenter: Roberta Sanfilippo
Session: Poster Display session 1
Resources:
Abstract
4279 - Efficacy and Safety of VEGFR2 Inhibitor Apatinib combined with chemotherapy for Sarcoma in Stage IV
Presenter: Zhiwu Ren
Session: Poster Display session 1
Resources:
Abstract
5929 - Outcomes of metastatic soft tissue sarcoma treated with Pazopanib from dedicated medical oncology sarcoma clinic: A holistic care approach from a developing country
Presenter: Akhil Kapoor
Session: Poster Display session 1
Resources:
Abstract
2469 - Inhibition of mTOR signaling enhances Trabectedin activity in Soft Tissue Sarcoma
Presenter: David Moura
Session: Poster Display session 1
Resources:
Abstract
4210 - Efficacy and safety of apatinib for advanced gastrointestinal stromal tumors after failure of imatinib and sunitinib: An open-label, multicenter, single-arm, phase II trial
Presenter: Zhaolun Cai
Session: Poster Display session 1
Resources:
Abstract