Characteristics associated with significantly worse quality of life in mycosis fungoides/Sezary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study
Cowan, Richard A
AffiliationUniversity Hospitals Birmingham, UK
MetadataShow full item record
AbstractBACKGROUND: 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.
CitationMolloy 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.
JournalThe British Journal of Dermatology
- Measurement of Quality of Life in Patients with Mycosis Fungoides/Sézary Syndrome Cutaneous T-Cell Lymphoma: Development of an Electronic Instrument.
- Authors: McCaffrey S, Black RA, Nagao M, Sepassi M, Sharma G, Thornton S, Kim YH, Braverman J
- Issue date: 2019 Jan 7
- Clinical severity measures and quality-of-life burden in patients with mycosis fungoides and Sézary syndrome: comparison of generic and dermatology-specific instruments.
- Authors: Herbosa CM, Semenov YR, Rosenberg AR, Mehta-Shah N, Musiek AC
- Issue date: 2020 May
- Primary cutaneous T-cell lymphoma (mycosis fungoides and Sézary syndrome): part II. Prognosis, management, and future directions.
- Authors: Jawed SI, Myskowski PL, Horwitz S, Moskowitz A, Querfeld C
- Issue date: 2014 Feb
- Cutaneous Lymphoma International Consortium Study of Outcome in Advanced Stages of Mycosis Fungoides and Sézary Syndrome: Effect of Specific Prognostic Markers on Survival and Development of a Prognostic Model.
- Authors: Scarisbrick JJ, Prince HM, Vermeer MH, Quaglino P, Horwitz S, Porcu P, Stadler R, Wood GS, Beylot-Barry M, Pham-Ledard A, Foss F, Girardi M, Bagot M, Michel L, Battistella M, Guitart J, Kuzel TM, Martinez-Escala ME, Estrach T, Papadavid E, Antoniou C, Rigopoulos D, Nikolaou V, Sugaya M, Miyagaki T, Gniadecki R, Sanches JA, Cury-Martins J, Miyashiro D, Servitje O, Muniesa C, Berti E, Onida F, Corti L, Hodak E, Amitay-Laish I, Ortiz-Romero PL, Rodríguez-Peralto JL, Knobler R, Porkert S, Bauer W, Pimpinelli N, Grandi V, Cowan R, Rook A, Kim E, Pileri A, Patrizi A, Pujol RM, Wong H, Tyler K, Stranzenbach R, Querfeld C, Fava P, Maule M, Willemze R, Evison F, Morris S, Twigger R, Talpur R, Kim J, Ognibene G, Li S, Tavallaee M, Hoppe RT, Duvic M, Whittaker SJ, Kim YH
- Issue date: 2015 Nov 10
- Quality of life and psychological distress in patients with cutaneous lymphoma.
- Authors: Sampogna F, Frontani M, Baliva G, Lombardo GA, Alvetreti G, Di Pietro C, Tabolli S, Russo G, Abeni D
- Issue date: 2009 Apr