Characteristics associated with significantly worse quality of life in mycosis fungoides/Sezary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study
dc.contributor.author | Molloy, K | |
dc.contributor.author | Jonak, C | |
dc.contributor.author | Woei, AJF | |
dc.contributor.author | Guenova, E | |
dc.contributor.author | Busschots, AM | |
dc.contributor.author | Bervoets, A | |
dc.contributor.author | Hauben, E | |
dc.contributor.author | Knobler, R | |
dc.contributor.author | Porkert, S | |
dc.contributor.author | Fassnacht, C | |
dc.contributor.author | Cowan, Richard A | |
dc.contributor.author | Papadavid, E | |
dc.contributor.author | Beylot-Barry, M | |
dc.contributor.author | Berti, E | |
dc.contributor.author | Alberti, VS | |
dc.contributor.author | Estrach, T | |
dc.contributor.author | Matin, R | |
dc.contributor.author | Akilov, O | |
dc.contributor.author | Vakeva, L | |
dc.contributor.author | Prince, M | |
dc.contributor.author | Bates, A | |
dc.contributor.author | Bayne, M | |
dc.contributor.author | Wachsmuch, R | |
dc.contributor.author | Wehkamp, U | |
dc.contributor.author | Marschalko, M | |
dc.contributor.author | Servitje, O | |
dc.contributor.author | Turner, D | |
dc.contributor.author | Weatherhead, S | |
dc.contributor.author | Wobser, M | |
dc.contributor.author | Sanches, JA | |
dc.contributor.author | McKay, P | |
dc.contributor.author | Klemke, D | |
dc.contributor.author | Peng, C | |
dc.contributor.author | Howles, A | |
dc.contributor.author | Yoo, J | |
dc.contributor.author | Evison, F | |
dc.contributor.author | Scarisbrick, J | |
dc.date.accessioned | 2019-06-25T09:32:58Z | |
dc.date.available | 2019-06-25T09:32:58Z | |
dc.date.issued | 2019 | en |
dc.identifier.citation | Molloy K, Jonak C, Woei AJF, Guenova E, Busschots AM, Bervoets A, et al. Characteristics associated with significantly worse quality of life in mycosis fungoides/Sezary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study. Br J Dermatol. 2019 May 2. | en |
dc.identifier.pmid | 31049926 | en |
dc.identifier.doi | 10.1111/bjd.18089 | en |
dc.identifier.uri | http://hdl.handle.net/10541/621909 | |
dc.description.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 (?=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. | en |
dc.language.iso | en | en |
dc.relation.url | https://dx.doi.org/10.1111/bjd.18089 | en |
dc.title | Characteristics associated with significantly worse quality of life in mycosis fungoides/Sezary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study | en |
dc.type | Article | en |
dc.contributor.department | University Hospitals Birmingham, UK | en |
dc.identifier.journal | The British Journal of Dermatology | en |
dc.description.note | en] |