OBJECTIVES: This research was designed to provide quantifiable insights into the prevalence and management of a rare disease, mycosis fungoides (MF-CTCL), in France and Spain. It aimed to compare patient pathways for MF-CTCL, to quantify distribution of patients between hospital types and to describe use of current treatments

METHODS: 60-minute Interviews were carried out with 11 clinical experts. 102 healthcare professionals and 40 patients completed 20-minute online questionnaires. In addition, 69 patient records were collected to provide longitudinal treatment data. The research was carried out between December 2018 and February 2019

RESULTS: The study indicated that 7,013 MF-CTCL patients are under care in France and 6,046 in Spain. Patients in both countries reported initial incorrect GP diagnosis (75% in France, 94% in Spain). In both countries there was a delay of over a year between symptoms and diagnosis. A larger proportion of French patients (80%) were treated in either centres of excellence or university/teaching hospitals, 62% of Spanish patients were treated in such centres. Shared care is important in both countries although it was reported more frequently in France (67% vs. 39%). Treatment in France is more aggressive in early stages (Stage IA<10% Body Surface Area). In France 24% of early stage patients are treated with either a systemic or combination treatment, in Spain this proportion is only 15%. CONCLUSIONS: This study provided a robust quantification of MF-CTCL patients treated in France and Spain, it described differences in care pathways that may impact on patient access to treatment.