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    The British journal of dermatology. 2019 May 2. doi: 10.1111/bjd.18089
    Characteristics associated with significantly worse quality of life in mycosis fungoides/Sézary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study.
    Molloy K1,  Jonak C2,  Sherida FJ3,  Woei-A-Jin H4,  Guenova E5,  Busschots AM6,  Bervoets A7,  Hauben E8,  Knobler R9,  Porkert S10,  Fassnacht C11,  Cowan R12,  Papadavid E13,  Beylot-Barry M14,  Berti E15,  Alberti Violetti S16,  Estrach T17,  Matin R18,  Akilov O19,  Vakeva L20,  Prince M21,  Bates A22,  Bayne M23,  Wachsmuch R24,  Wehkamp U25,  Marschalko M26,  Servitje O27,  Turner D28,  Weatherhead S29,  Wobser M30,  Sanches JA31,  McKay P32,  Klemke D33,  Peng C34,  Howles A35,  Yoo J36,  Evison F37,  Scarisbrick J38
    Author information
    Abstract

    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. This article is protected by copyright. All rights reserved.


    This article is protected by copyright. All rights reserved.

    Publikations ID: 31049926
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