Characteristics associated with significantly worse quality of life in mycosis fungoides/Sezary
syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI)
study
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.; Vakeva, L.; Prince, M.; Bates, A.; Bayne, M.; Wachsmuch, R.; Wehkamp, U.; Marschalko, M. [Marschalkó, Márta (Nemi betegségek, ...), szerző] Bőr-, Nemikórtani
és Bőronkológiai Klinika (SE / AOK / K); 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.
Angol nyelvű Sokszerzős vagy csoportos szerzőségű szakcikk (Folyóiratcikk) Tudományos
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.
