Current state of medical care for patients with mycosis fungoides and Sézary syndrome at a German university hospital – a cross‐sectional study

BACKGROUND: Studies on the state of medical care for patients with cutaneous T-cell lymphoma (CTCL) are limited. To date, only secondary data analyses are available for Germany. PATIENTS AND METHODS: Cross-sectional study conducted over a one-year recruitment period (01 March 2024 to 28 February 2025) in the dermatological department of a German university hospital. The physician questionnaire recorded the skin-related burden of disease using the mSWAT and data on disease course, while the patient questionnaire recorded socio-demographic and clinical parameters, patient satisfaction, and health-related quality of life using the Skindex-29. RESULTS: 121 patients (median age 63 years, 66.9 % male) with mycosis fungoides (95.0 %) and Sézary syndrome (5.0 %) were included. 30.0 % of the working patients reported sick leave due to CTCL and 51.7 % had already been hospitalized at least once for this indication. The Skindex-29 revealed an impairment in quality of life in 52.9 % of patients. Patients with higher disease stages (IIB-IVB according to EORTC/ISCL), lack of response to therapy, and an mSWAT ≥ 30 showed a significantly higher impairment in quality of life. A median of 4 follow-up appointments were attended annually, with 63.6 % of patients being treated exclusively at the university hospital. CONCLUSIONS: This study is the first to analyze the state of medical care of patients with mycosis fungoides and Sézary syndrome using primary data from routine care at a German university hospital and reveals a high burden of disease as well as a high need for care.