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Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T‐cell lymphoma on quality of life

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....

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Autores principales: Ottevanger, Rosanne, Feenstra, Judith S., van Vliet, Liesbeth M., van Beugen, Sylvia, Evers, Andrea W. M., Kennedy, Cees, Willemze, Rein, Vermeer, Maarten H., Quint, Koen D.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10690699/
https://www.ncbi.nlm.nih.gov/pubmed/38047257
http://dx.doi.org/10.1002/ski2.300
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author Ottevanger, Rosanne
Feenstra, Judith S.
van Vliet, Liesbeth M.
van Beugen, Sylvia
Evers, Andrea W. M.
Kennedy, Cees
Willemze, Rein
Vermeer, Maarten H.
Quint, Koen D.
author_facet Ottevanger, Rosanne
Feenstra, Judith S.
van Vliet, Liesbeth M.
van Beugen, Sylvia
Evers, Andrea W. M.
Kennedy, Cees
Willemze, Rein
Vermeer, Maarten H.
Quint, Koen D.
author_sort Ottevanger, Rosanne
collection PubMed
description 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.
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spelling pubmed-106906992023-12-02 Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T‐cell lymphoma on quality of life Ottevanger, Rosanne Feenstra, Judith S. van Vliet, Liesbeth M. van Beugen, Sylvia Evers, Andrea W. M. Kennedy, Cees Willemze, Rein Vermeer, Maarten H. Quint, Koen D. Skin Health Dis Original Articles 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. John Wiley and Sons Inc. 2023-10-26 /pmc/articles/PMC10690699/ /pubmed/38047257 http://dx.doi.org/10.1002/ski2.300 Text en © 2023 The Authors. Skin Health and Disease published by John Wiley & Sons Ltd on behalf of British Association of Dermatologists. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Original Articles
Ottevanger, Rosanne
Feenstra, Judith S.
van Vliet, Liesbeth M.
van Beugen, Sylvia
Evers, Andrea W. M.
Kennedy, Cees
Willemze, Rein
Vermeer, Maarten H.
Quint, Koen D.
Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T‐cell lymphoma on quality of life
title Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T‐cell lymphoma on quality of life
title_full Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T‐cell lymphoma on quality of life
title_fullStr Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T‐cell lymphoma on quality of life
title_full_unstemmed Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T‐cell lymphoma on quality of life
title_short Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T‐cell lymphoma on quality of life
title_sort unveiling the hidden struggles: exploring the profound impact of advanced stage cutaneous t‐cell lymphoma on quality of life
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10690699/
https://www.ncbi.nlm.nih.gov/pubmed/38047257
http://dx.doi.org/10.1002/ski2.300
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