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Characteristics associated with significantly worse quality of life in mycosis fungoides/Sezary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) studyMolloy, K; Jonak, C; Woei, AJF; Guenova, E; Busschots, AM; Bervoets, A; Hauben, E; Knobler, R; Porkert, S; Fassnacht, C; et al. (2019)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 (?=8·61, p=0·003) and alopecia (?=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. This article is protected by copyright. All rights reserved.
An overall response in skin is associated with improved HRQoL in patients with MF/SS enrolled in the PROCLIPI studyMolloy, K; Jonak, C; Sherida, FJ; Woei, AJ; Guenova, E; Busschots, AM; Bervoets, A; Hauben, E; Knobler, R; Porkert, S; et al. (2019)