Characteristics associated with significantly worse quality of life in mycosis fungoides/Sézary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study.
- Molloy K University Hospitals Birmingham, Birmingham, U.K.
- Jonak C Medical University of Vienna, Vienna, Austria.
- Woei-A-Jin FJSH University Hospitals Leuven, Belgium.
- Guenova E University Hospital Zurich, Switzerland.
- Busschots AM University Hospitals Leuven, Belgium.
- Bervoets A University Hospitals Leuven, Belgium.
- Hauben E University Hospitals Leuven, Belgium.
- Knobler R Medical University of Vienna, Vienna, Austria.
- Porkert S Medical University of Vienna, Vienna, Austria.
- Fassnacht C University Hospital Zurich, Switzerland.
- Cowan R Christie Hospital, Manchester, U.K.
- Papadavid E Athens University Medical School, Athens, Greece.
- Beylot-Barry M Centre Hospitalier Universitaire Hospital de Bordeaux, Bordeaux, France.
- Berti E Department of Dermatology, Fondazione Ca' Granda, IRCCS, OMP, Milan, Italy.
- Alberti Violetti S Department of Dermatology, Fondazione Ca' Granda, IRCCS, OMP, Milan, Italy.
- Estrach T Hospital Clinico, University of Barcelona, Barcelona, Spain.
- Matin R Churchill Hospital, Oxford, U.K.
- Akilov O University of Pittsburgh School of Medicine, Pittsburgh, PA, U.S.A.
- Vakeva L Helsinki University Central Hospital, Helsinki, Finland.
- Prince M Peter MacCallum Cancer Centre, Melbourne, Australia.
- Bates A University Hospital Southampton, Southampton, U.K.
- Bayne M Poole Hospital, Dorset, U.K.
- Wachsmuch R Royal Devon and Exeter Hospital, Exeter, U.K.
- Wehkamp U University Hospital Kiel, Kiel, Germany.
- Marschalko M Semmelweis University, Budapest, Hungary.
- Servitje O Hospital Universatari de Bellvitge, Barcelona, Spain.
- Turner D Torbay Hospital, Torquay, U.K.
- Weatherhead S Newcastle Upon Tyne NHS Trust, Newcastle Upon Tyne, U.K.
- Wobser M University Hospital Würzburg, Würzburg, Germany.
- Sanches JA University of São Paulo Medical School, São Paulo, Brazil.
- McKay P Beatson West of Scotland Cancer Centre, Glasgow, U.K.
- Klemke D Stadtisches Klinikum Karlsruhe, Karlsruhe, Germany.
- Peng C University Hospitals Birmingham, Birmingham, U.K.
- Howles A University Hospitals Birmingham, Birmingham, U.K.
- Yoo J University Hospitals Birmingham, Birmingham, U.K.
- Evison F University Hospitals Birmingham, Birmingham, U.K.
- Scarisbrick J University Hospitals Birmingham, Birmingham, U.K.
- 2019-05-04
Published in:
- The British journal of dermatology. - 2020
English
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. What's already known about this topic? Cross-sectional studies of mixed populations of known and newly diagnosed patients with mycosis fungoides (MF)/Sézary syndrome (SS) have shown significant impairment in health-related quality of life (HRQoL). Previous studies on assessing gender-specific differences in HRQoL in MF/SS are conflicting. More advanced-stage disease and pruritus is associated with poorer HRQoL in patients with MF/SS. What does this study add? This is the first prospective study to investigate HRQoL in a homogenous group of newly diagnosed patients with MF/SS. In patients newly diagnosed with MF/SS, HRQoL is worse in women and in those with alopecia and confluent erythema. MF/SS diagnosis has a multidimensional impact on patient HRQoL, including a large burden of cutaneous symptoms, as well as a negative impact on emotional well-being.
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. What's already known about this topic? Cross-sectional studies of mixed populations of known and newly diagnosed patients with mycosis fungoides (MF)/Sézary syndrome (SS) have shown significant impairment in health-related quality of life (HRQoL). Previous studies on assessing gender-specific differences in HRQoL in MF/SS are conflicting. More advanced-stage disease and pruritus is associated with poorer HRQoL in patients with MF/SS. What does this study add? This is the first prospective study to investigate HRQoL in a homogenous group of newly diagnosed patients with MF/SS. In patients newly diagnosed with MF/SS, HRQoL is worse in women and in those with alopecia and confluent erythema. MF/SS diagnosis has a multidimensional impact on patient HRQoL, including a large burden of cutaneous symptoms, as well as a negative impact on emotional well-being.
- Language
-
- English
- Open access status
- green
- Identifiers
-
- DOI 10.1111/bjd.18089
- PMID 31049926
- Persistent URL
- https://sonar.ch/global/documents/152942
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