OBJECTIVES

There are limited published data on the real-world management and outcomes of patients with Mycosis Fungoides (MF) and Sézary Syndrome (SS), particularly for end-stage disease. This study aimed to describe the end-of-life clinical pathway, healthcare resource utilisation (HCRU) and costs associated with MF and SS.

METHODS

Patients with ICD-10 diagnoses of MF (C84.0) or SS (C84.1) between 1-Oct-2010 and 31-March-2019 recorded in the National Health Service’s Hospital Episode Statistics (HES) database, who died in the same period, were included. Secondary care activity was described from diagnosis, including number of lines, types and duration of systemic (non-topical) treatments (of those available in HES). HCRU and costs per patient/week were evaluated for 6-monthly periods in the 24 months before death.

RESULTS

During the study period, 554/1,737 (32%) patients with MF and 88/165 (53%) with SS died (MF: mean age at diagnosis=72 years, 65% male; SS: mean age=71 years, 48% male). Of patients who died, 46% with MF and 39% with SS had ≥1 treatment and 11% MF and 11% SS patients had ≥3 lines (≥70% received systemic anti-cancer treatments for each line). While the frequency of outpatient, Accident and Emergency and inpatient spells were relatively stable over time, the duration of inpatient stays increased towards end-of-life (mean duration of inpatient stays occurring 18-24 months prior to death=12 days [MF] and 16 days [SS]; mean duration in the 6 months prior to death=23 days [MF] and 24 days [SS]). Mean total cost of HCRU per patient/week ranged from £77 to £180 (MF) and £59 to £164 (SS) depending on the time period, with a 50-100% increase observed by the final 6 months of life.

CONCLUSIONS

This study highlighted the significant burden of MF and SS prior to death, with many patients experiencing multiple systemic treatment switches and high resource use and costs.