Healthcare Experiences and Satisfaction of Care Among Leiomyosarcoma Patients and Healthcare Professionals: A Mixed-Methods Project from the EORTC QoL Rare Cancer Study

Leiomyosarcoma (LMS) is a rare cancer characterised by patients facing delayed diagnosis and fragmented care. Existing patient reported experience measures (PREMs) might not capture the realities of this population. This study evaluated the relevance of three European Organization for Research and Treatment of Cancer (EORTC) questionnaires to patients and healthcare professionals (HCPs), and used qualitative interviews to identify experiences not present in the questionnaires. Questions from three EORTC questionnaires (QLQ-INFO25, QLQ-COMU26, PATSAT-C33) were rated for relevance on a 4-point Likert scale. Semi-structured interviews were analysed thematically and compared to questionnaires to identify care gaps. Patients emphasised open communication (41.7%) and diagnostic information (33.3%), while HCPs focused on communicating prognostic information and expected benefit of treatment (60%). Interviews revealed patient dissatisfaction with informational clarity and administrative delays; HCPs highlighted gaps in multidisciplinary coordination and standardised protocols. This mixed-methods study elucidates the gap between EORTC tools and the lived realities of patients with LMS. Findings support the refinement of existing instruments, stronger connection between peers, and better information provision for patients with leiomyosarcoma.