(P 444) HEALTH-RELATED QUALITY OF LIFE (HRQOL) CHALLENGES IN PATIENTS WITH EPITHELIOID HEMANGIOENDOTHELIOMA (EHE): ANALYSIS OF AN ULTRA-RARE SARCOMA GROUP

Objective: Patients diagnosed with Epithelioid Hemangioendothelioma (EHE) face significant challenges due to the ultra-rare nature of their disease. EHE is known for its heterogeneity, with some patients experiencing an indolent, asymptomatic course, while others face aggressive disease with pain and poor prognosis. Little is known about how their health-related quality of life (HRQoL) is affected by these challenges and the scarcity of information surrounding their condition. This study qualitatively explored EHE patients' HRQoL.

Methods: This is a secondary analysis from an EORTC QLG project on health-related quality of life in solid rare cancers (003-2022). Thirty-one patients with EHE from twelve different countries completed one quality of life questionnaire (EORTC QLQ-C30) and were interviewed. Thematic analysis was performed using ATLAS.ti and core themes and sub-themes were identified via the biopsychosocial model. Descriptive basic analysis and questionnaire data were performed.

Results: The EORTC QLQ-C30 showed no floor or ceiling effects. The highest mean scores were related to pain. Interview analysis identified 25 themes across three domains: physical (e.g., fatigue, sleep disturbances, pain, respiratory issues, and functional limitations), mental (e.g., fear of recurrence, scanxiety, emotional distress, and cognitive changes), and social health (e.g., loss of independence, financial burden, lack of support, and impact on relationships). These themes illustrate the multifaceted burden of living with EHE.

Conclusion: Patients with EHE face challenges because of the rarity of their disease. HRQoL themes illustrate the multifaceted burden of living with a sarcoma, from uncertainty, isolation, and lack of understanding, to more shared physical complaints such as fatigue and pain. Further research is needed to further explore different disease courses and how it affects patients’ quality of life. Beyond the need of personalised supportive care, results of this study will help create an item list to complement the EORTC QLQ-C30 questionnaire for use in trials among EHE patients.