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

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Molloy , K , Jonak , C , Woei-A-Jin , F J S H , Guenova , E , Busschots , A M , Bervoets , A , Hauben , E , Knobler , R , Porkert , S , Fassnacht , C , Cowan , R , Papadavid , E , Beylot-Barry , M , Berti , E , Violetti , S A , Estrach , T , Matin , R , Akilov , O , Väkevä , L , Prince , M , Bates , A , Bayne , M , Wachsmuch , R , Wehkamp , U , Marschalko , M , Servitje , O , Turner , D , Weatherhead , S , Wobser , M , Sanches , J A , McKay , P , Klemke , D , Peng , C , Howles , A , Yoo , J , Evison , F & Scarisbrick , J 2020 , ' Characteristics associated with significantly worse quality of life in mycosis fungoides/Sezary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study ' , British Journal of Dermatology , vol. 182 , no. 3 , pp. 770-779 . https://doi.org/10.1111/bjd.18089

Title: Characteristics associated with significantly worse quality of life in mycosis fungoides/Sezary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study
Author: Molloy, K.; Jonak, C.; Woei-A-Jin, F. J. S. H.; Guenova, E.; Busschots, A. M.; Bervoets, A.; Hauben, E.; Knobler, R.; Porkert, S.; Fassnacht, C.; Cowan, R.; Papadavid, E.; Beylot-Barry, M.; Berti, E.; Violetti, S. Alberti; Estrach, T.; Matin, R.; Akilov, O.; Väkevä, L.; Prince, M.; Bates, A.; Bayne, M.; Wachsmuch, R.; Wehkamp, U.; Marschalko, M.; Servitje, O.; Turner, D.; Weatherhead, S.; Wobser, M.; Sanches, J. A.; McKay, P.; Klemke, D.; Peng, C.; Howles, A.; Yoo, J.; Evison, F.; Scarisbrick, J.
Contributor: University of Helsinki, Staff Services
Date: 2020-03
Language: eng
Number of pages: 10
Belongs to series: British Journal of Dermatology
ISSN: 0007-0963
URI: http://hdl.handle.net/10138/314618
Abstract: Background Mycosis fungoides (MF) and Sezary 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 patients newly diagnosed with MF/SS. Methods Patients enrolled into Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI; an international observational study in MF/SS) had their HRQoL assessed using the Skindex-29 questionnaire. Skindex-29 scores were analysed in relation to patient- and disease-specific characteristics. Results The study population consisted of 237 patients [60 center dot 3% male; median age 60 years, (interquartile range 49-70)], of whom 179 had early MF and 58 had advanced MF/SS. In univariate analysis, HRQoL, as measured by Skindex-29, was worse in women, SS, late-stage MF, those with elevated lactate dehydrogenase, alopecia, high modified Severity Weighted Assessment Tool and confluent erythema. Linear regression models only identified female gender (beta = 8 center dot 61; P = 0 center dot 003) and alopecia (beta = 9 center dot 71, P = 0 center dot 02) as independent predictors of worse global HRQoL. Item-level analysis showed that the severe impairment in symptoms [odds ratio (OR) 2 center dot 14, 95% confidence interval (CI) 1 center dot 19-3 center dot 89] and emotions (OR 1 center dot 88, 95% CI 1 center dot 09-3 center dot 27) subscale scores seen in women was caused by more burning/stinging, pruritus, irritation and greater feelings of depression, shame, embarrassment and annoyance with their diagnosis of MF/SS. Conclusions HRQoL is significantly more impaired in newly diagnosed women 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 cutaneous T-cell lymphoma-specific questionnaire is urgently needed to more accurately assess disease-specific HRQoL in these patients.
Subject: T-CELL LYMPHOMA
SEZARY-SYNDROME
EUROPEAN-ORGANIZATION
SKIN-DISEASE
HEALTH
IMPACT
CANCER
CLASSIFICATION
SEVERITY
PRURITUS
3121 General medicine, internal medicine and other clinical medicine
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