Quality of Life in a Swedish Cohort of Patients with Mycosis Fungoides
DOI:
https://doi.org/10.2340/actadv.v106.adv-2026-0364Keywords:
CCL17, TARC, Cutaneous T-Cell Lymphoma, Health Related Quality of Life, Dermatology life quality index, Mycosis Fungoides, Itch, SkinAbstract
Mycosis fungoides (MF) is a disease that evolves slowly over years with few options for curative treatment. Improving health-related quality of life (HRQoL) is therefore an important treatment goal. This study aims to contribute to a better understanding of HRQoL, using a dermatology-adapted HRQoL questionnaire, Dermatology Life Quality Index (DLQI), in patients with MF. Baseline data from a cohort study (BIO-MUSE) of patients with MF wasere used to investigate which aspect of DLQI is the most affected and how DLQI relates to different clinical and physiological parameters. Data from a period of 12 months were used to study how DLQI changes over time. The symptom domain, for example itching, was the aspect of the DLQI that had the greatest impact on HRQoL. Thymus and activation-regulated chemokine (TARC)/ chemokine (C-C) ligand 17 (CCL17) were analysed in blood and were shown to have a positive correlation with DLQI (r=0.482, p=0.043). It was further shown that increased itching at baseline was a strong predictor of a worse DLQI score in the domain of symptoms (r=0.677, p=0.002). Future research in a larger cohort is needed to investigate the effect of itch in HRQoLhealth-related quality of life in patients with MF.
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Bobrowicz M, Fassnacht C, Ignatova D, Chang YT, Dimitriou F, Guenova E. Pathogenesis and therapy of primary cutaneous Tcell lymphoma: Collegium Internationale Allergologicum (CIA) update 2020. Int Arch Allergy Immunol 2020; 181: 733–745. DOI: https://doi.org/10.1159/000509281
Larocca C, Kupper T. Mycosis fungoides and Sézary syndrome: an update. Hematol Oncol Clin North Am 2019; 33: 103–120. DOI: https://doi.org/10.1016/j.hoc.2018.09.001
Willemze R, Cerroni L, Kempf W, Berti E, Facchetti F, Swerdlow SH, et al. The 2018 update of the WHO-EORTC classification for primary cutaneous lymphomas. Blood 2019; 133: 1703–1714. DOI: https://doi.org/10.1182/blood-2018-11-881268
Lee H. Mycosis fungoides and Sézary syndrome. Blood Res 2023; 58: 66–82. DOI: https://doi.org/10.5045/br.2023.2023023
Wilcox RA. Cutaneous T-cell lymphoma: 2017 update on diagnosis, risk-stratification, and management. Am J Hematol 2017; 92: 1085–1102. DOI: https://doi.org/10.1002/ajh.24876
Miyagaki T. Diagnosis of early mycosis fungoides. Diagnostics 2021; 11. DOI: https://doi.org/10.3390/diagnostics11091721
Olsen E, Vonderheid E, Pimpinelli N, Willemze R, Kim Y, Knobler R, et al. Revisions to the staging and classification of mycosis fungoides and Sezary syndrome: a proposal of the International Society for Cutaneous Lymphomas (ISCL) and the cutaneous lymphoma task force of the European Organization of Research and Treatment of Cancer (EORTC). Blood 2007; 110: 1713–1722. DOI: https://doi.org/10.1182/blood-2007-03-055749
Talpur R, Singh L, Daulat S, Liu P, Seyfer S, Trynosky T, et al. Long-term outcomes of 1,263 patients with mycosis fungoides and Sézary syndrome from 1982 to 2009. Clin Cancer Res 2012; 18: 5051–5060. DOI: https://doi.org/10.1158/1078-0432.CCR-12-0604
Gilson D, Whittaker SJ, Child FJ, Scarisbrick JJ, Illidge TM, Parry EJ, et al. British Association of Dermatologists and U.K. Cutaneous Lymphoma Group guidelines for the management of primary cutaneous lymphomas 2018. Br J Dermatol 2019; 180: 496–526. DOI: https://doi.org/10.1111/bjd.17240
Karimi M, Brazier J. Health, health-related quality of life, and quality of life: What is the difference? Pharmacoeconomics 2016; 34: 645–649. DOI: https://doi.org/10.1007/s40273-016-0389-9
Jonak C, Porkert S, Oerlemans S, Papadavid E, Molloy K, Lehner-Baumgartner E, et al. Health-related quality of life in cutaneous lymphomas: past, present and future. Acta Derm Venereol 2019; 99: 640–646. DOI: https://doi.org/10.2340/00015555-3171
Ottevanger R, van Beugen S, Evers AWM, Willemze R, Vermeer MH, Quint KD. Quality of life in patients with mycosis fungoides and Sézary syndrome: a systematic review of the literature. J Eur Acad Dermatol Venereol 2021; 35: 2377–2387. DOI: https://doi.org/10.1111/jdv.17570
Yoshie O, Matsushima K. CCR4 and its ligands: from bench to bedside. Int Immunol 2015; 27: 11–20. DOI: https://doi.org/10.1093/intimm/dxu079
Kimura T, Sugaya M, Suga H, Morimura S, Miyamoto A, Kai H, et al. Variations in serum TARC and I-TAC levels reflect minor changes in disease activity and pruritus in atopic dermatitis. Acta Derm Venereol 2014; 94: 331–332. DOI: https://doi.org/10.2340/00015555-1709
Kakinuma T, Nakamura K, Wakugawa M, Mitsui H, Tada Y, Saeki H, et al. Thymus and activation-regulated chemokine in atopic dermatitis: serum thymus and activation-regulated chemokine level is closely related with disease activity. J Allergy Clin Immunol 2001; 107: 535–541. DOI: https://doi.org/10.1067/mai.2001.113237
Lewis V, Finlay AY. 10 years experience of the Dermatology Life Quality Index (DLQI). J Investig Dermatol Symp Proc 2004; 9: 169–180. DOI: https://doi.org/10.1111/j.1087-0024.2004.09113.x
Ayyalaraju RS, Finlay AY, Dykes PJ, Trent JT, Kirsner RS, Kerdel FA. Hospitalization for severe skin disease improves quality of life in the United Kingdom and the United States: a comparative study. J Am Acad Dermatol 2003; 49: 249–254. DOI: https://doi.org/10.1067/S0190-9622(03)00897-1
Booken N, Heck M, Nicolay JP, Klemke CD, Goerdt S, Utikal J. Oral aprepitant in the therapy of refractory pruritus in erythrodermic cutaneous T-cell lymphoma. Br J Dermatol 2011; 164: 665–667. DOI: https://doi.org/10.1111/j.1365-2133.2010.10108.x
Jennings T, Duffy R, Gochoco A, Knoblauch K, Shi W, Alpdogan SO, et al. Valchlor maintenance therapy for patients with mycosis fungoides who received low dose total skin electron beam treatment. Chin Clin Oncol 2019; 8: 13. DOI: https://doi.org/10.21037/cco.2018.10.01
Steinke S, Zeidler C, Riepe C, Bruland P, Soto-Rey I, Storck M, et al. Humanistic burden of chronic pruritus in patients with inflammatory dermatoses: results of the European Academy of Dermatology and Venereology Network on Assessment of Severity and Burden of Pruritus (PruNet) cross-sectional trial. J Am Acad Dermatol 2018; 79: 457–463. DOI: https://doi.org/10.1016/j.jaad.2018.04.044
Belfrage E, Ek S, Johansson Å, Brauner H, Sonesson A, Drott K. Predictive and prognostic biomarkers in patients with mycosis fungoides and Sézary syndrome (BIO-MUSE): protocol for a translational study. JMIR Res Protoc 2024; 13: e55723. DOI: https://doi.org/10.2196/55723
Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)-a simple practical measure for routine clinical use. Clin Exp Dermatol 1994; 19: 210–216. DOI: https://doi.org/10.1111/j.1365-2230.1994.tb01167.x
Hongbo Y, Thomas CL, Harrison MA, Salek MS, Finlay AY. Translating the science of quality of life into practice: What do dermatology life quality index scores mean? J Invest Dermatol 2005; 125: 659–664. DOI: https://doi.org/10.1111/j.0022-202X.2005.23621.x
Basra MKA, Salek MS, Camilleri L, Sturkey R, Finlay AY. Determining the minimal clinically important difference and responsiveness of the Dermatology Life Quality Index (DLQI): further data. Dermatology 2015; 230: 27–33. DOI: https://doi.org/10.1159/000365390
Stevens SR, Ke MS, Parry EJ, Mark J, Cooper KD. Quantifying skin disease burden in mycosis fungoides-type cutaneous Tcell lymphomas: the severity-weighted assessment tool (SWAT). Arch Dermatol 2002; 138: 42–48. DOI: https://doi.org/10.1001/archderm.138.1.42
Olsen EA, Whittaker S, Kim YH, Duvic M, Prince HM, Lessin SR, et al. Clinical end points and response criteria in mycosis fungoides and Sézary syndrome: a consensus statement of the International Society for Cutaneous Lymphomas, the United States Cutaneous Lymphoma Consortium, and the Cutaneous Lymphoma Task Force of the European Organisation for Research and Treatment of Cancer. J Clin Oncol 2011; 29: 2598–2607. DOI: https://doi.org/10.1200/JCO.2010.32.0630
Yosipovitch G, Reaney M, Mastey V, Eckert L, Abbé A, Nelson L, et al. Peak pruritus numerical rating scale: psychometric validation and responder definition for assessing itch in moderate-to-severe atopic dermatitis. Br J Dermatol 2019; 181: 761–769. DOI: https://doi.org/10.1111/bjd.17744
Dias-Barbosa C, Matos R, Vernon M, Carney CE, Krystal A, Puelles J. Content validity of a sleep numerical rating scale and a sleep diary in adults and adolescents with moderate-to-severe atopic dermatitis. J Patient Rep Outcomes 2020; 4: 100. DOI: https://doi.org/10.1186/s41687-020-00265-y
Alexander H, Brown S, Danby S, Flohr C. Research techniques made simple: transepidermal water loss measurement as a research tool. J Invest Dermatol 2018; 138: 2295–2300. DOI: https://doi.org/10.1016/j.jid.2018.09.001
Akdeniz M, Gabriel S, Lichterfeld-Kottner A, Blume-Peytavi U, Kottner J. Transepidermal water loss in healthy adults: a systematic review and meta-analysis update. Br J Dermatol 2018; 179: 1049– DOI: https://doi.org/10.1111/bjd.17025
Pinnagoda J, Tupker RA, Agner T, Serup J. Guidelines for transepidermal water loss (TEWL) measurement. A report from the Standardization Group of the European Society of Contact Dermatitis. Contact Derm 1990; 22: 164–178. DOI: https://doi.org/10.1111/j.1600-0536.1990.tb01553.x
Martín-Carrasco P, Morillo-Andújar M, Sendín-Martín M, Conejo-Mir J. Quality of life in patients with cutaneous T-cell lymphoma. Actas Dermosifiliogr 2019; 110: 511–513. DOI: https://doi.org/10.1016/j.adengl.2019.01.015
Nourmohammadpour P, Nasimi M, Aryanian Z, Goodarzi A, Jahazi R, Etesami I. Characteristics associated with quality of life in the early stages of mycosis fungoides. Caspian J Intern Med 2023; 14: 16–22.
Chalaka CW, Mahurin HM, Tarabadkar E, Hippe DS, Loggers ET, Shinohara MM. Gender disparities in health-related quality of life (HRQoL) in patients with cutaneous T-cell lymphoma. Int J Womens Dermatol 2023; 9: e085. DOI: https://doi.org/10.1097/JW9.0000000000000085
Porkert S, Lehner-Baumgartner E, Valencak J, Knobler R, Riedl E, Jonak C. Patients’ illness perception as a tool to improve individual disease management in primary cutaneous lymphomas. Acta Derm Venereol 2018; 98: 240–245. DOI: https://doi.org/10.2340/00015555-2819
Molloy K, Jonak C, Woei-A-Jin FJSH, Guenova E, Busschots AM, Bervoets A, et al. Characteristics associated with significantly worse quality of life in mycosis fungoides/Sézary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study. Br J Dermatol 2020; 182: 770–779. DOI: https://doi.org/10.1111/bjd.18089
Solak B, Kara RÖ. Systemic inflammation and its relationship with pruritus in early-stage mycosis fungoides. J Cell Mol Med 2024; 28: e18125. DOI: https://doi.org/10.1111/jcmm.18125
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