Abstract

This study aimed to describe the real-world demographics, management, clinical outcomes and healthcare resource use (HCRU) and costs of UK patients with Mycosis Fungoides (MF) and Sézary Syndrome (SS). Patients with ICD-10 diagnoses of MF (C84.0) or SS (C84.1) in the National Health Service’s Hospital Episode Statistics (HES) database between 1-Oct-2010 and 31-Mar-2019 were included, with secondary care activity tracked from diagnosis to study end date/death. Overall survival (OS) was calculated from date of diagnosis until death (or censored at study end date, if still alive). Next treatment-free survival (NTFS) was calculated from diagnosis until the date a new systemic (non-topical) treatment (of those available in HES) was started or added to existing treatment, or death. OS and NTFS were also calculated from the start of the next new systemic treatment. HCRU costs were estimated per patient/week. 1,737 patients with MF and 165 patients with SS (MF: mean age at diagnosis=65 years, 62% male; SS: mean age=66 years, 48% male) were included. 513 (30%) patients with MF and 58 (35%) with SS had ≥1 change in treatment and 554 (32%) MF and 88 (53%) SS patients died during the study period. Median OS for SS was 2.6 years (median not reached for MF) and median NTFS was 4.6 years (MF) and 1.0 years (SS). From start of the next new treatment, median OS was 1.5 years (MF) and 1.0 years (SS) and median NTFS was 0.3 years (MF) and 0.3 years (SS). Mean total HCRU costs varied between £53.07-£105.70 (MF) and £ 29.36-£135.93 (SS) per patient/week depending on the treatment line. HES data highlighted the significant real-world burden of MF and SS in England, demonstrating that many patients managed within the secondary care setting experience multiple treatment changes and poor survival outcomes, with high HCRU costs.

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