OBJECTIVES

Although the PROCLIPI international registry of Mycosis Fungoides in CTCL is being developed, a national UK registry for MF-CTCL does not yet exist. There is uncertainty about the overall prevalence and how the patients are distributed across care centres. Our objective was to assess the proportion of patients treated within different categories of hospitals, to understand the patient pathway and to describe current treatment preferences.

METHODS

: A total of 76 interviews with clinical experts, healthcare professionals and patients were carried out, via questionnaires and telephone interviews. In addition, 44 patient records were collected to provide a longitudinal view of the patient treatment. The research integrated data from multiple sources to provide insights across range of hospital institutions and from physician specialties.

RESULTS

: In this study HCPs working in hospitals designated as supra-regional centres for the treatment of MF-CTCL were involved in treating a median of 120 MF-CTCL patients in the previous 12 months. This compared to medians of 42 for dermatology expert centres and 13 for other hospital types. Extrapolation of these patient numbers for all English institutions of each type provided a prevalence of 3,515 for England and therefore 4,077 for the UK in total. Examination of the patient pathway showed that multidisciplinary teams were involved in 73% of patients’ treatment review. Experts report that MF-CTCL knowledge and diagnostic facilities are lacking in regional and local hospitals, and they therefore support the supra-regional care model in order to improve diagnostic and treatment consistency for the benefit of patients.

CONCLUSIONS

MF-CTCL treatment is concentrated in expert centres involving multi-disciplinary teams. Various treatments are prescribed for early stages but unmet needs remain evident. The availability of new topical treatment options is seen as useful additions to existing treatments, especially when there is lack of efficacy of topical treatments or difficult access to phototherapy.