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.