Abstract
Epithelioid haemangioendothelioma (EHE) is an ultrarare vascular sarcoma with an incidence of <1/million/year and a large clinical heterogeneity. Data on supportive care needs of rare cancer patients are scarce. This study aimed to investigate the level of supportive care needs of EHE patients and its association with sociodemographic, clinical and symptom burden characteristics. We present secondary data of a cross-sectional questionnaire study involving EHE patients recruited from the international EHE Facebook group. Data were collected using the web-based PROFILES registry. Unmet needs were measured with Supportive Care Needs Survey Short Form (SCNS-SF34). 115 EHE patients from 20 countries completed the online questionnaire. Mean level of supportive care needs was 68.4 (range 34-170), with the highest mean score on the psychological domain. Supportive care needs were associated with age, disease stage, years since diagnosis and number of tumour locations. Highly symptomatic patients (33%) reported more supportive care needs than patients with low or intermediate symptom burden. Supportive care needs were found in all domains, highest in the psychological domain, and were associated with sociodemographic, clinical and symptom burden characteristics. Adequate and tailored supportive care should be offered especially to highly symptomatic EHE patients.
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Disclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.