Characteristics associated with significantly worse quality of life in mycosis fungoides/Sézary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study

Background Mycosis fungoides (MF) and Sézary Syndrome (SS) are the most common cutaneous T‐cell lymphomas. MF/SS is accompanied by considerable morbidity from pain, itching and disfigurement. Aim To identify factors associated with poorer health‐related quality of life (HRQoL) in newly diagnosed MF/SS patients. Methods Patients enrolled into PROCLIPI (an international observational study in MF/SS) had HRQoL assessed using the Skindex‐29 questionnaire. Skindex‐29 scores were analysed in relation to patient‐specific and disease‐specific characteristics. Results The study population consisted of 237 patients (60·3% male) with a median age of 60 years (IQR 49‐70yrs), of whom 179 had early MF and 58 had advanced MF/SS. In univariate analysis, HRQoL as measured by Skindex‐29 was worse in females, SS, late‐stage MF, those with elevated LDH, alopecia, high mSWAT and confluent erythema. Linear regression models only identified female gender (β=8·61, p=0·003) and alopecia (β=9·71, p=0·02) as independent predictors for worse global HRQoL. In item‐level analysis showed that the severe impairment in symptoms (OR 2·14, 95% CI 1·19‐3·89) and emotions (OR 1·88, 95% CI 1·09‐3·27) subscale scores seen in female patients was caused by more burning/stinging, pruritus, irritation and greater feelings of depression, shame, embarrassment and annoyance with their diagnosis of MF/SS. Conclusion HRQoL is significantly more impaired in newly diagnosed female patients with MF/SS and in those with alopecia. As Skindex‐29 does not include existential questions on cancer which may cause additional worry and distress, a comprehensive validated CTCL specific questionnaire is urgently needed to more accurately assess disease‐specific HRQoL among these patients.