Healthcare Provider Experience in Diagnosing and Treating Cutaneous T-Cell Lymphoma

INTRODUCTION: Cutaneous T-cell lymphoma (CTCL) is a rare, heterogeneous group of non-Hodgkin lymphomas characterized by various clinical, molecular, and histopathologic features of the skin. Variants of CTCL share many clinical features with common inflammatory skin diseases such as atopic dermatitis and psoriasis, making accurate and early diagnosis challenging in clinical settings. Inappropriate treatment or a delay in diagnosis can lead to increased morbidity and mortality. Here, we report findings from an online survey that investigated dermatology community practice, knowledge, and education surrounding CTCL. METHODS: An electronic survey of ten questions was developed and approved by physician experts in CTCL to assess experiences in diagnosing and treating CTCL among healthcare providers (HCPs). The survey was deployed to 10,600 US dermatology HCPs, including medical doctors (MDs), doctors of osteopathic medicine (DOs), nurse practitioners (NPs), and physician assistants (PAs) and excluding HCPs associated with CTCL centers of excellence. RESULTS: Among 44 HCPs who responded and were eligible for inclusion, 82% had diagnosed between one and ten CTCL cases in the last 5 years. Most respondents (91%) reported that they include CTCL in their differential diagnoses after patients do not respond to treatment of more common conditions. Patients with CTCL were frequently diagnosed with other inflammatory dermatoses—most commonly dermatitis and psoriasis—before a CTCL diagnosis, and many were treated with ineffective therapies for years. The most common length of time before a CTCL diagnosis was made was between 1 and 3 years, though 16% of HCPs reported that patients were treated for other diseases or skin conditions for ≥ 5 years. Two-thirds of HCPs agreed that further education surrounding CTCL is needed. CONCLUSIONS: Given the infrequency of CTCL and its similar presentation to other common dermatologic conditions, increased education of CTCL is needed in the dermatology community to improve patient outcomes.