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
4228 - Clinical Evaluation of Drug-Eluting Bead Transcatheter Arterial Chemoembolization(D-TACE) versus Conventional TACE in Treatment of unresectable Hepatocellular Carcinoma
Presenter: Yi Chen
Session: Poster Display session 1
Resources:
Abstract
3930 - Safety profile of tepotinib in patients with advanced solid tumors: pooled analysis of phase I and II data
Presenter: Thomas Decaens
Session: Poster Display session 1
Resources:
Abstract
5373 - Drug-drug interaction profile of tepotinib with CYP3A and P-gp substrates
Presenter: Juergen Heuer
Session: Poster Display session 1
Resources:
Abstract
5455 - Bioavailability of tepotinib: impact of omeprazole and food
Presenter: Juergen Heuer
Session: Poster Display session 1
Resources:
Abstract
2618 - Tislelizumab Exposure-Response Analyses of Efficacy and Safety in Patients with Advanced Tumors
Presenter: Chi-Yuan Wu
Session: Poster Display session 1
Resources:
Abstract
2563 - Population Pharmacokinetics of Tislelizumab in Patients with Advanced Tumors
Presenter: Chi-Yuan Wu
Session: Poster Display session 1
Resources:
Abstract
2021 - The Addition of Metformin to Systemic Anticancer Therapy
Presenter: Jung Han Kim
Session: Poster Display session 1
Resources:
Abstract
5243 - Growth modulation index (GMI) as a comparative measure of clinical activity of larotrectinib versus prior systemic treatments in adult and pediatric TRK fusion cancer patients
Presenter: Antoine Italiano
Session: Poster Display session 1
Resources:
Abstract
598 - Analysis of the overall survival and main surrogates used for FDA approvals in solid and hematological malignancies.
Presenter: Maria Kleniewska-Wieczor
Session: Poster Display session 1
Resources:
Abstract
5381 - Comparison of intratumoral docetaxel exposure in cancer patients between nanoparticle entrapped docetaxel (CPC634) and conventional docetaxel (Cd): the CriTax study
Presenter: Ruben Van Eerden
Session: Poster Display session 1
Resources:
Abstract