Supportive care needs of patients living with an extremely rare and unpredictable cancer: The Epithelioid Haemangioendothelioma patient experience

Objective 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. Methods 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). Results 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. Conclusion 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.