Patient and care partner burden in cutaneous T-cell lymphoma using disease-specific measures of symptoms and health-related quality of life
Year: 2026
Type: article
Study design: Observational Study
Abstract: Patients with mycosis fungoides (MF) or Sézary syndrome (SS) may experience visible lesions, severe itch, sleep disturbance, body temperature dysregulation and depression. In this international study, 73 patients completed a symptom diary and questionnaires relating to fatigue and health-related quality of life [HRQoL: the MF/SS-cutaneous T-cell lymphoma QoL measure (MF/SS-CTCL QoL)]; 24 care partners also completed an HRQoL questionnaire. Patients reported a high symptom burden that differed between MF and SS, with a moderate impact on HRQoL. This is the first study to identify which symptoms of MF/SS compromise different aspects of both patients’ and care partners’ HRQoL. Addressing specific skin symptoms may improve patients’ fatigue, sleep and overall HRQoL and care partners’ HRQoL.
Source: British Journal of Dermatology
DOI: 10.1093/bjd/ljag266
Authors: Julia J Scarisbrick, Larisa Geskin, Sima Rozati, Erika Morsia, Koen D Quint, Amy Musiek, Arvind Arumainathan, Jennifer DeSimone, Richard Cowan, Antonio Giordano, Michi M Shinohara, Cristina Muniesa, Ramon M Pujol, Maria C Goldaniga, Silvia Alberti-Violetti, Kayane Mheidly, Alessandro Pileri, Claire Esler, Luca Nassi, Susan Thornton, Kerry Sandilands, Angela Williams, Annabel Bowden, Jennifer E Dent, Miriam Teoli
Language: English
Subfield: Dermatology
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $4,920
Funder: Kyowa Hakko Kirin
OpenAlex ID: W7204229343