Mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL) epidemiology and treatment pathway in Spain: new insights for an accurate description

Article Details

Authors
Paolo D’Agostino MSc, Alan Kent BSc (Hons), Eric Sharp MRSB, Fabian Schmidt Dipl.Kfm, Marco Turini MSc

Article Type
Original Research

DOI
10.7573/dic.2020-4-8

Related Articles

Article Page

Abstract

Background: Mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL) is a rare lymphoma localized in the skin. Due to its indolent nature and similarity to other skin conditions, diagnosis is often delayed or incorrect. Consequently, accurate calculations of incidence and prevalence are difficult to make. The treatment pathway taken by MF-CTCL patients can differ depending upon local healthcare systems, clinical policies and guidelines.

Aims: This study aims to (1) provide an estimate for the prevalence of treated MF-CTCL patients in Spain, (2) describe the Spanish patient treatment pathways for MF-CTCL, including quantification of the distribution of patients between primary, secondary and tertiary care institutions, and (3) investigate and quantify the treatment preferences of physicians.

Methodology: This study employed primary market research methodologies to facilitate the collection of patient numbers and treatment practices from healthcare professionals (HCPs) and patients.

Limitations: Poor diagnosis of MF-CTCL may mean that actual prevalence levels in the broader population are higher than those estimated by this analysis of treated patients. This study was reliant upon accurate reporting by HCPs of patient numbers and their personal treatment practices. The rarity of the condition means the patient sample size is relatively small and limits possible accuracy of the quantitative analyses of patientderived data, although this is supplemented by HCP-derived data in the analysis.

Findings: Around 75% of MF-CTCL patients in Spain report that the initial diagnosis by their general practitioner is incorrect. This is usually due to underestimation of severity or type of skin disease. Once they have been correctly diagnosed (usually by a dermatologist) in secondary care, the management of MF-CTCL is led by dermatologists. In 39% of patients, shared care teams are also involved in patient management. Following diagnosis, the majority of patient management is conducted by secondary or tertiary care centers.

Conclusions: Incidence rates have increased in recent years, and possible reasons for this include improving levels of diagnosis. Survival in MF-CTCL has also increased over the last few decades. This trend appears to be reflected in the prevalence reported in this study, which is higher than suggested by some other estimates. However, it is still likely that there are further undiagnosed MF-CTCL patients in Spain due to the challenges of diagnosis at the primary care level.

Keywords: epidemiology, mycosis fungoides, prevalence, T-cell lymphoma.

Citation: D’Agostino P, Kent A, Sharp E, Schmidt F, Turini M. Mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL) epidemiology and treatment pathway in Spain: new insights for an accurate description. Drugs in Context 2020; 9: 2020-4-8. DOI: 10.7573/dic.2020-4-8

Contributions: All named authors contributed to the conception of the work; the acquisition, analysis, and interpretation of the data; and drafting and revision of the manuscript. All named authors meet the International Committee of Medical Journal Editors (ICMJE) criteria for authorship for this article, take responsibility for the integrity of the work as a whole, and have given their approval for this version to be published.

Disclosure and potential conflicts of interest: Paolo D’Agostino and Marco Turini were both employees of Helsinn Healthcare SA at the time of the study. Fabian Schmidt was an employee of Recordati Rare Diseases SARL at the time of the study. Eric Sharp and Alan Kent are both directors of Polestar Insights Limited. The International Committee of Medical Journal Editors (ICMJE) Potential Conflicts of Interests form for the authors is available for download at: https://www.drugsincontext.com/wp-content/uploads/2020/07/dic.2020-4-8-COI.pdf

Acknowledgements: None.

Funding declaration: This study was conducted by Polestar Insights Ltd and was funded by Helsinn Healthcare SA, Pazzallo-Lugano, Switzerland.

Copyright: Copyright © 2020 D’Agostino P, Kent A, Sharp E, Schmidt F, Turini M. Published by Drugs in Context under Creative Commons License Deed CC BY NC ND 4.0 which allows anyone to copy, distribute, and transmit the article provided it is properly attributed in the manner specified below. No commercial use without permission.

Correct attribution: Copyright © 2020 D’Agostino P, Kent A, Sharp E, Schmidt F, Turini M. https://doi.org/10.7573/dic.2020-4-8. Published by Drugs in Context under Creative Commons License Deed CC BY NC ND 4.0.

Article URL: https://www.drugsincontext.com/mycosis-fungoides-type-cutaneous-t-cell-lymphoma-(mf-ctcl)-epidemiology-and-treatment-pathway-in-spain:-new-insights-for-an-accurate-description

Correspondence: Paolo D’Agostino, Helsinn Healthcare SA, Via Pian Scairolo, Pazzallo-Lugano, Switzerland. paolo.dagostino@helsinn.com

Provenance: submitted; externally peer reviewed.

Submitted: 17 April 2020; Peer review comments to author: 25 May 2020; Revised manuscript received: 23 June 2020; Accepted: 25 June 2020; Publication date: 5 August 2020.

Drugs in Context is published by BioExcel Publishing Ltd. Registered office: Plaza Building, Lee High Road, London, England, SE13 5PT.

BioExcel Publishing Limited is registered in England Number 10038393. VAT GB 252 7720 07.

For all manuscript and submissions enquiries, contact the Editorial office editorial@drugsincontext.com

For all permissions, rights and reprints, contact David Hughes david.hughes@bioexcelpublishing.com

Download free full text PDF Supplementary material