Care structure of patients with mycosis fungoides and Sézary syndrome in Germany – Care research based on SHI claims data.

Summary: Background: Cutaneous T‐cell lymphomas (CTCLs) are rare forms of non‐Hodgkin's lymphoma of T‐cell origin that occur mainly in the skin. The most common form is mycosis fungoides (MF), but Sézary syndrome (SS), a more aggressive form of CTCL, is another relevant subgroup. Due to the rare nature of the disease, population‐based studies of the epidemiology and disease burden and insights into care delivery are limited. Patients and methods: Based on an anonymized, age and sex‐adjusted routine dataset comprising approximately five million people with statutory health insurance, a retrospective, longitudinal healthcare research study was conducted over a six‐year period (2012–2017). Results: In 55 % of patients with MF and SS, the initial diagnosis was documented in an outpatient setting; in 59 % of cases by a dermatologist. Immunophenotyping by flow cytometry is considered an important investigative tool for the detection and follow‐up surveillance of blood involvement of cutaneous lymphomas, as the disease stage is the most important prognostic factor in MF and SS; this was performed in only 10 % of patients. The first‐line treatment was topical (76 %), in particular with corticosteroids (66 %). Conclusions: The findings from this healthcare research point to the need for increased guideline‐based care. [ABSTRACT FROM AUTHOR]