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

K. Molloy, C. Jonak, F. J.S.H. Woei-A-Jin, E. Guenova, A. M. Busschots, A. Bervoets, E. Hauben, R. Knobler, S. Porkert, C. Fassnacht, R. Cowan, E. Papadavid, M. Beylot-Barry, E. Berti, S. Alberti Violetti, T. Estrach, R. Matin, O. Akilov, L. Vakeva, M. PrinceA. Bates, M. Bayne, R. Wachsmuch, U. Wehkamp, M. Marschalko, O. Servitje, D. Turner, S. Weatherhead, M. Wobser, J. A. Sanches, P. McKay, D. Klemke, C. Peng, A. Howles, J. Yoo, F. Evison, J. Scarisbrick

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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 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 [60·3% 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 (β = 8·61; P = 0·003) and alopecia (β = 9·71, P = 0·02) as independent predictors of worse global HRQoL. Item-level analysis showed that the severe impairment in symptoms [odds ratio (OR) 2·14, 95% confidence interval (CI) 1·19–3·89] and emotions (OR 1·88, 95% CI 1·09–3·27) 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.

Original languageEnglish
JournalBritish Journal of Dermatology
DOIs
Publication statusPublished - Jan 1 2019

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ASJC Scopus subject areas

  • Dermatology

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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., Alberti Violetti, S., Estrach, T., Matin, R., Akilov, O., Vakeva, L., ... Scarisbrick, J. (2019). Characteristics associated with significantly worse quality of life in mycosis fungoides/Sézary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study. British Journal of Dermatology. https://doi.org/10.1111/bjd.18089