Impact of Mycosis Fungoides/Sézary Syndrome on Patients’ and Cohabitants’ Quality of Life—A Cross-Sectional Study

<b>Background/Objectives</b>: Mycosis fungoides (MF) and Sézary syndrome (SS) are chronic cutaneous T-cell lymphomas frequently associated with pruritus, psychological distress, and impaired quality of life (QoL). While the impact of MF/SS on patients' quality of life is well recognized, data on the burden experienced by cohabitants remain limited. The aim of this study was to assess dermatology-specific quality of life in patients with MF/SS and their cohabitants and to explore its associations with pruritus severity, depressive symptoms, and disease stage. <b>Methods</b>: This cross-sectional study included 25 patient-cohabitant pairs (25 patients with MF/SS and their cohabitants living in the same household) recruited at a tertiary dermatology center. Patients completed the Dermatology Life Quality Index (DLQI), Beck Depression Inventory I (BDI-I), and pruritus intensity scales (Numeric Rating Scale and Visual Analogue Scale), whereas cohabitants completed the Family Dermatology Life Quality Index (FDLQI) to assess the family burden of the disease. Associations between quality-of-life measures, clinical characteristics, pruritus, and depressive symptoms were analyzed. <b>Results</b>: Patients reported moderate impairment in dermatology-specific quality of life (mean DLQI score of 9.3 ± 6.1), which was significantly greater in patients with advanced-stage disease (<i>p</i> = 0.022). Cohabitants also experienced moderate impairment in quality of life (mean FDLQI score of 8.0 ± 4.8), independent of disease stage. DLQI scores showed significant positive correlations with pruritus severity, depressive symptoms, and cohabitants' FDLQI scores. Pruritus severity was a key determinant of impaired quality of life but did not differ significantly between disease stages. <b>Conclusions</b>: MF/SS are associated with a substantial multidimensional burden affecting both patients and their cohabitants. Quality-of-life impairment in family members correlates closely with patient-reported symptoms and well-being, supporting the concept of MF/SS as conditions affecting the patient-family unit. Incorporating caregiver perspectives and systematic symptom assessment may improve holistic management of MF/SS.

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Journal
Journal of Clinical Medicine
Published
2026-03-12
DOI
https://doi.org/10.3390/jcm15062159
Primary Topic
Cutaneous lymphoproliferative disorders research
Type
article
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article

Impact of Mycosis Fungoides/Sézary Syndrome on Patients’ and Cohabitants’ Quality of Life—A Cross-Sectional Study

Magdalena Łyko, Alina Jankowska-Konsur
Journal of Clinical Medicine
Cutaneous lymphoproliferative disorders research
article

Impact of Mycosis Fungoides/Sézary Syndrome on Patients’ and Cohabitants’ Quality of Life—A Cross-Sectional Study

Magdalena Łyko, Alina Jankowska-Konsur
article en

Abstract

<b>Background/Objectives</b>: Mycosis fungoides (MF) and Sézary syndrome (SS) are chronic cutaneous T-cell lymphomas frequently associated with pruritus, psychological distress, and impaired quality of life (QoL). While the impact of MF/SS on patients' quality of life is well recognized, data on the burden experienced by cohabitants remain limited. The aim of this study was to assess dermatology-specific quality of life in patients with MF/SS and their cohabitants and to explore its associations with pruritus severity, depressive symptoms, and disease stage. <b>Methods</b>: This cross-sectional study included 25 patient-cohabitant pairs (25 patients with MF/SS and their cohabitants living in the same household) recruited at a tertiary dermatology center. Patients completed the Dermatology Life Quality Index (DLQI), Beck Depression Inventory I (BDI-I), and pruritus intensity scales (Numeric Rating Scale and Visual Analogue Scale), whereas cohabitants completed the Family Dermatology Life Quality Index (FDLQI) to assess the family burden of the disease. Associations between quality-of-life measures, clinical characteristics, pruritus, and depressive symptoms were analyzed. <b>Results</b>: Patients reported moderate impairment in dermatology-specific quality of life (mean DLQI score of 9.3 ± 6.1), which was significantly greater in patients with advanced-stage disease (<i>p</i> = 0.022). Cohabitants also experienced moderate impairment in quality of life (mean FDLQI score of 8.0 ± 4.8), independent of disease stage. DLQI scores showed significant positive correlations with pruritus severity, depressive symptoms, and cohabitants' FDLQI scores. Pruritus severity was a key determinant of impaired quality of life but did not differ significantly between disease stages. <b>Conclusions</b>: MF/SS are associated with a substantial multidimensional burden affecting both patients and their cohabitants. Quality-of-life impairment in family members correlates closely with patient-reported symptoms and well-being, supporting the concept of MF/SS as conditions affecting the patient-family unit. Incorporating caregiver perspectives and systematic symptom assessment may improve holistic management of MF/SS.

Journal of Clinical MedicineVol. 15(6)
Wroclaw Medical University (PL)
Openalex Percentile: Top 22%
Cutaneous lymphoproliferative disorders research
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