Mycosis fungoides (MF) is a rare skin lymphoma and the most common type of cutaneous T-cell lymphoma. It is characterised by painful, itchy skin patches and plaques, which can progress into tumours. Patients with MF are stratified into disease stages (IA-IVB) according to disease severity in skin, lymph nodes, viscera, and blood. There is a paucity of data regarding how healthcare resource use (HCRU) including appointments, imaging, monitoring, radiotherapy, and skin dressings, varies by disease stage.

An online questionnaire was sent to clinicians working at key NHS lymphoma treatment centres (N=7) to elicit information on the HCRU of MF patients. Appropriate healthcare resources for consideration were informed through targeted literature searching and clinician input. The questionnaire collected responses regarding the proportion of patients requiring each resource and the frequency at which each resource would be used, stratified by early-stage (IA and IB-IIA) or late-stage (IIB-IVB) MF. Disease stages associated with similar levels of HCRU were grouped, as informed by expert opinion. From the responses, mean HCRU was calculated, and associated costs determined using 2017/18 NHS reference costs.

Late-stage MF patients had higher average HCRU than early-stage MF patients. This resulted in greater costs per month (pm) for appointments (£1,091.10 versus £62.97pm), monitoring (£32.12 versus £0.43pm), and radiotherapy (£438.99 versus £34.75pm). For skin dressings, there were higher monthly costs for stage IIB-IVB patients (£173.11) than stage IIA-IB patients (£71.05), or stage IA patients (£2.89).

Higher HCRU and costs for patients with late-stage MF (IIB-IVB) compared with patients in the earlier-stages of disease (IA and IB-IIA) should be considered when assessing cost-effectiveness of therapies that slow or prevent MF progression. Although sample size was small, this study represents a substantial proportion of clinicians from key lymphoma service hospitals, responsible for a large number of MF patients in the UK.