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IntroductionCutaneous T cell lymphoma (CTCL) is a group of non-Hodgkin lymphomas that primarily affects the skin and can mimic inflammatory dermatoses. Unlike many skin diseases, CTCL can lead to disabling symptoms, and advanced CTCL can even be fatal. Early studies investigating health-related quality of life (HRQOL) in patients with mycosis fungoides (MF) and Sézary syndrome (SS), common subtypes of CTCL, demonstrated significant impairment across numerous domains. The aim of this current study is to develop a core domain set (CDS) to identify the essential aspects of MF/SS that influence HRQOL that should be measured in therapeutic clinical trials. In the future, this set of core concepts will be used to identify the best patient- reported outcome measure(s) (PROM) for HRQOL for MF/SS clinical research.Methods and analysisMultiple strategies will be used to generate candidate concepts: systematic review of the literature, qualitative study and a survey study of healthcare providers. A Delphi consensus process including a comprehensive group of stakeholders (patients, caregivers/care partners, a multidisciplinary group of healthcare professionals, patient advocacy groups, pharmaceutical industry representatives, methodologists and government agencies) will be used to achieve consensus. Statistical corrections for multiple significance testing and false positive findings will be undertaken.Ethics and disseminationThe study was submitted for and received institutional review board approval at the University of Washington (IRB# STUDY00018890 and STUDY00019407). Informed consent will be obtained from all participants where necessary. We will disseminate our findings through peer-reviewed, open access publications and presentations at national/international conferences. We will provide a plain language summary in lay terms for patients and families to patient advocacy groups for distribution to their network.Registration detailsThe protocol is registered in the Core Outcome Measures in Effectiveness Trials (COMET) database.

A healthy 16-year-old boy presented with a rash and painful back. This occurred minutes after an acrobatic act in the swimming pool where he landed flat on his back. The lesions were painful. He was diagnosed with pressure urticaria. Graphical Abstract Graphical Abstract A healthy 16-year-old boy presented with a rash and painful back. This occurred minutes after an acrobatic act in the swimming pool where he landed flat on his back. The lesions were painful. He was diagnosed with pressure urticaria.

Background There is no consensus on how best to assess the impact of living with mycosis fungoides (MF)/Sézary syndrome (SS) on a patient's quality of life. Objectives To identify all potential concepts that describe disease severity or contribute to health‐related quality of life (HRQOL) from patients with MF/SS and their care partners. Methods A systemic literature review of articles and meeting s published between 2000 and 2022 was conducted. Inclusion criteria were any study that included MF/SS patients or care partners and reported any concept that patients or care partners could use to characterize any aspect of MF/SS. Thematic analysis was completed using NVIVO. Results One hundred and three articles/s met inclusion criteria. Within these studies, 30 existing instruments were utilized. Concepts within these existing instruments fell into the following health component categories: Physical‐functional well‐being (PF; 50.4%), mental health/emotional well‐being (MHE; 26.6%), social well‐being (S; 18.3%) or other (O; 4.7%). The most frequently measured concepts by existing instruments were physical mobility (7.5%), itching (7.2%), pain (7.0%) and fatigue (5.2%). One study conducted content validity analysis for an included instrument. Distinct concepts were identified from qualitative studies and novel instruments, and included hair loss, nail changes, cracking/fissuring of the skin, inability to regulate temperature, difficulty with wound dressings, skin infection, skin oozing/weeping/bleeding, pigmentary changes, treatment burden and treatment satisfaction, and care partners' specific concepts. One study conducted content validity analysis for an included instrument. Conclusions Numerous PROMs have been used to assess HRQOL for patients with MF/SS, with very little content validity analysis. Several concepts identified from qualitative studies and newly developed or piloted instruments are not represented in existing PROMs. Future efforts will include prioritizing candidate core concepts by stakeholders to develop a core domain set that captures the most relevant aspects of MF/SS that impact HRQOL. Summary The purpose of this study was to identify all potential concepts related to disease severity or contribute to health‐related quality of life (HRQOL) elicited from patients with mycosis fungoides/Sézary syndrome (MF/SS) and their care partners. We provide a comprehensive list of concepts that patients and caregivers use to describe disease severity and HRQOL. We identify gaps in instruments commonly used to assess HRQOL for patients with MF/SS. Numerous different measures have been used to assess HRQOL for patients with MF/SS, with little content validity analysis. An all‐inclusive summary of candidate concepts is a critical first step to enable the development of a core domain set that captures the most relevant aspects of MF/SS that impact HRQOL. There is no consensus on how best to assess the impact of living with mycosis fungoides (MF)/Sézary Syndrome (SS). We conducted a systemic literature review of any study that included MF/SS patients or care partners and reported any concept this group could use to characterize any aspect of MF/SS. Thematic analysis was completed using NVIVO. 103 studies were included that utilized 30 existing instruments and several novel concepts. Future efforts include prioritizing candidate concepts for a core domain set. Trial Registration PROSPERO number: CRD42024511024.

Erythrodermic mycosis fungoides and Sézary syndrome are chronic, relapsing-remitting diseases that greatly impacts patients' quality of life (QoL). Mogamulizumab-kpkc (Mogamulizumab) is a novel therapeutic agent for cutaneous T-cell lymphomas with a notable impact on progression-free survival. Qualitative assessment methods allow a broader exploration and greater insight in individual patient experience than quantitative studies. However, there is limited data on the impact of mogamulizumab on health-related QoL. To investigate the impact of erythrodermic cutaneous T-cell lymphoma (E-CTCL) on QoL and the effect of mogamulizumab on the QoL. Semi-structured interview were conducted with seven patients with E-CTCL that were receiving mogamulizumab treatment. Five major themes arose: Diagnosis and the diagnostic delay and uncertainty experienced by participants; Physical functioning due to the high symptom burden; Psychological and social functioning considering the significant impact on daily life; Treatment and the effect of mogamulizumab; and Support by family, friends and health professionals. Mogamulizumab therapy resulted in a significant decrease of symptoms. The small sample size should also be taken into account although data saturation was reached. This study gives a broad insight into the large impact of E-CTCL and the major consequences on the physical functioning as well as on the emotional/psychological and social well-being. Mogamulizumab appears to have a positive effect on symptoms.

Background: Erythrodermic cutaneous T-cell lymphoma (E-CTCL) is associated with a poor prognosis and severe symptoms. Objective: To establish insights into the quality of life (QoL), expectations, and treatment satisfaction of E-CTCL patients receiving mogamulizumab. Methods: Outcomes of this prospective cohort study conducted between September 2020 and August 2021 at the Leiden University Medical Center included the dermatology-specific QoL (Skindex-29), health-related QoL (RAND-12), degree of itch, pain, and fatigue (Visual Analogue Scale), patient’s expectations, and treatment satisfaction (Client Satisfaction Questionnaire-8 (CSQ-8)), measured at baseline and after six months. Results: 13 patients with E-CTCL were included. Most patients anticipated a positive treatment effect on symptoms. Five patients (46%) improved one or more clinical categories regarding the symptoms domain, six (55%) regarding emotions, four (36%) regarding functioning, and four (36%) regarding the overall Skindex-29 score compared to baseline. The Mental Component Score clinically improved from 31 (IQR 29–51) at baseline to 38 (IQR 25–51). The median VAS itch improved significantly from baseline (8 (IQR 7–10) vs. 3 (IQR 1–8), p = 0.024). Most patients (n = 7) were “very satisfied” with their treatment. Limitations: There was a limited number of patients due to the rarity of the disease. Conclusion: In general, mogamulizumab has a favorable effect on biochemical- and dermatology-specific QoL and physical functioning in some patients, with high treatment satisfaction. Itch especially improved over time in most patients. The treatment satisfaction was generally high. Mogamulizumab seems to be an effective treatment that improves the QoL in patients with E-CTCL.

Background: Little is known about the impact of MF on quality of life (QoL) in newly diagnosed patients. Objectives: To describe the impact of the MF diagnosis on QoL, patient expectations, and treatment satisfaction over the first 6 months after diagnosis. Methods: Outcomes of this prospective cohort study of newly diagnosed MF patients conducted between 2020 and 2022 at the Leiden University Medical Center included the Skindex-29, RAND-12 Health Survey, degree of itch, pain, and fatigue (Visual Analogue Scale (VAS)), patient expectations, and Client Satisfaction Questionnaire-8 (CSQ-8), measured at baseline and after six months. Results: A total of 28 patients with MF were included. At baseline, 66% (n = 18) “strongly-totally” expected positive effects of the treatment. At the time of diagnosis, 28% of the patients (n = 8) were moderately to severely affected. There was no statistical change in the Skindex-29 score sum score (20 [10–34] vs. 20 [9–36]; p = 0.81) or in the other three subdomains, the RAND-12 scores, and the VAS itch, pain, and fatigue over time. Treatment satisfaction was high overall. Conclusion: Despite that the newly diagnosed MF patients anticipate a positive treatment effect, few improvements in QoL and symptom reduction were found. These data can be used for adequate expectation management and provide a rationale for further evaluation of treatment regimens in these patients.

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