Proportion and characteristics of secondary progressive multiple sclerosis in five European registries using objective classifiers
BACKGROUND: To assign a course of secondary progressive multiple sclerosis (MS) (SPMS) may be difficult and the proportion of persons with SPMS varies between reports. An objective method for disease course classification may give a better estimation of the relative proportions of relapsing–remittin...
Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2023
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9936396/ https://www.ncbi.nlm.nih.gov/pubmed/36816812 http://dx.doi.org/10.1177/20552173231153557 |
_version_ | 1784890220650430464 |
---|---|
author | Forsberg, Lars Spelman, Tim Klyve, Pernilla Manouchehrinia, Ali Ramanujam, Ryan Mouresan, Elena Drahota, Jiri Horakova, Dana Joensen, Hanna Pontieri, Luigi Magyari, Melinda Ellenberger, David Stahmann, Alexander Rodgers, Jeff Witts, James Middleton, Rod Nicholas, Richard Bezlyak, Vladimir Adlard, Nicholas Hach, Thomas Lines, Carol Vukusic, Sandra Soilu-Hänninen, Merja van der Walt, Anneke Butzkueven, Helmut Iaffaldano, Pietro Trojano, Maria Glaser, Anna Hillert, Jan |
author_facet | Forsberg, Lars Spelman, Tim Klyve, Pernilla Manouchehrinia, Ali Ramanujam, Ryan Mouresan, Elena Drahota, Jiri Horakova, Dana Joensen, Hanna Pontieri, Luigi Magyari, Melinda Ellenberger, David Stahmann, Alexander Rodgers, Jeff Witts, James Middleton, Rod Nicholas, Richard Bezlyak, Vladimir Adlard, Nicholas Hach, Thomas Lines, Carol Vukusic, Sandra Soilu-Hänninen, Merja van der Walt, Anneke Butzkueven, Helmut Iaffaldano, Pietro Trojano, Maria Glaser, Anna Hillert, Jan |
author_sort | Forsberg, Lars |
collection | PubMed |
description | BACKGROUND: To assign a course of secondary progressive multiple sclerosis (MS) (SPMS) may be difficult and the proportion of persons with SPMS varies between reports. An objective method for disease course classification may give a better estimation of the relative proportions of relapsing–remitting MS (RRMS) and SPMS and may identify situations where SPMS is under reported. MATERIALS AND METHODS: Data were obtained for 61,900 MS patients from MS registries in the Czech Republic, Denmark, Germany, Sweden, and the United Kingdom (UK), including date of birth, sex, SP conversion year, visits with an Expanded Disability Status Scale (EDSS) score, MS onset and diagnosis date, relapses, and disease-modifying treatment (DMT) use. We included RRMS or SPMS patients with at least one visit between January 2017 and December 2019 if ≥ 18 years of age. We applied three objective methods: A set of SPMS clinical trial inclusion criteria (“EXPAND criteria”) modified for a real-world evidence setting, a modified version of the MSBase algorithm, and a decision tree-based algorithm recently published. RESULTS: The clinically assigned proportion of SPMS varied from 8.7% (Czechia) to 34.3% (UK). Objective classifiers estimated the proportion of SPMS from 15.1% (Germany by the EXPAND criteria) to 58.0% (UK by the decision tree method). Due to different requirements of number of EDSS scores, classifiers varied in the proportion they were able to classify; from 18% (UK by the MSBase algorithm) to 100% (the decision tree algorithm for all registries). Objectively classified SPMS patients were older, converted to SPMS later, had higher EDSS at index date and higher EDSS at conversion. More objectively classified SPMS were on DMTs compared to the clinically assigned. CONCLUSION: SPMS appears to be systematically underdiagnosed in MS registries. Reclassified patients were more commonly on DMTs. |
format | Online Article Text |
id | pubmed-9936396 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-99363962023-02-18 Proportion and characteristics of secondary progressive multiple sclerosis in five European registries using objective classifiers Forsberg, Lars Spelman, Tim Klyve, Pernilla Manouchehrinia, Ali Ramanujam, Ryan Mouresan, Elena Drahota, Jiri Horakova, Dana Joensen, Hanna Pontieri, Luigi Magyari, Melinda Ellenberger, David Stahmann, Alexander Rodgers, Jeff Witts, James Middleton, Rod Nicholas, Richard Bezlyak, Vladimir Adlard, Nicholas Hach, Thomas Lines, Carol Vukusic, Sandra Soilu-Hänninen, Merja van der Walt, Anneke Butzkueven, Helmut Iaffaldano, Pietro Trojano, Maria Glaser, Anna Hillert, Jan Mult Scler J Exp Transl Clin Original Research Article BACKGROUND: To assign a course of secondary progressive multiple sclerosis (MS) (SPMS) may be difficult and the proportion of persons with SPMS varies between reports. An objective method for disease course classification may give a better estimation of the relative proportions of relapsing–remitting MS (RRMS) and SPMS and may identify situations where SPMS is under reported. MATERIALS AND METHODS: Data were obtained for 61,900 MS patients from MS registries in the Czech Republic, Denmark, Germany, Sweden, and the United Kingdom (UK), including date of birth, sex, SP conversion year, visits with an Expanded Disability Status Scale (EDSS) score, MS onset and diagnosis date, relapses, and disease-modifying treatment (DMT) use. We included RRMS or SPMS patients with at least one visit between January 2017 and December 2019 if ≥ 18 years of age. We applied three objective methods: A set of SPMS clinical trial inclusion criteria (“EXPAND criteria”) modified for a real-world evidence setting, a modified version of the MSBase algorithm, and a decision tree-based algorithm recently published. RESULTS: The clinically assigned proportion of SPMS varied from 8.7% (Czechia) to 34.3% (UK). Objective classifiers estimated the proportion of SPMS from 15.1% (Germany by the EXPAND criteria) to 58.0% (UK by the decision tree method). Due to different requirements of number of EDSS scores, classifiers varied in the proportion they were able to classify; from 18% (UK by the MSBase algorithm) to 100% (the decision tree algorithm for all registries). Objectively classified SPMS patients were older, converted to SPMS later, had higher EDSS at index date and higher EDSS at conversion. More objectively classified SPMS were on DMTs compared to the clinically assigned. CONCLUSION: SPMS appears to be systematically underdiagnosed in MS registries. Reclassified patients were more commonly on DMTs. SAGE Publications 2023-02-16 /pmc/articles/PMC9936396/ /pubmed/36816812 http://dx.doi.org/10.1177/20552173231153557 Text en © The Author(s), 2023 https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
spellingShingle | Original Research Article Forsberg, Lars Spelman, Tim Klyve, Pernilla Manouchehrinia, Ali Ramanujam, Ryan Mouresan, Elena Drahota, Jiri Horakova, Dana Joensen, Hanna Pontieri, Luigi Magyari, Melinda Ellenberger, David Stahmann, Alexander Rodgers, Jeff Witts, James Middleton, Rod Nicholas, Richard Bezlyak, Vladimir Adlard, Nicholas Hach, Thomas Lines, Carol Vukusic, Sandra Soilu-Hänninen, Merja van der Walt, Anneke Butzkueven, Helmut Iaffaldano, Pietro Trojano, Maria Glaser, Anna Hillert, Jan Proportion and characteristics of secondary progressive multiple sclerosis in five European registries using objective classifiers |
title | Proportion and characteristics of secondary progressive multiple sclerosis in five European registries using objective classifiers |
title_full | Proportion and characteristics of secondary progressive multiple sclerosis in five European registries using objective classifiers |
title_fullStr | Proportion and characteristics of secondary progressive multiple sclerosis in five European registries using objective classifiers |
title_full_unstemmed | Proportion and characteristics of secondary progressive multiple sclerosis in five European registries using objective classifiers |
title_short | Proportion and characteristics of secondary progressive multiple sclerosis in five European registries using objective classifiers |
title_sort | proportion and characteristics of secondary progressive multiple sclerosis in five european registries using objective classifiers |
topic | Original Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9936396/ https://www.ncbi.nlm.nih.gov/pubmed/36816812 http://dx.doi.org/10.1177/20552173231153557 |
work_keys_str_mv | AT forsberglars proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT spelmantim proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT klyvepernilla proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT manouchehriniaali proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT ramanujamryan proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT mouresanelena proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT drahotajiri proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT horakovadana proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT joensenhanna proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT pontieriluigi proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT magyarimelinda proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT ellenbergerdavid proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT stahmannalexander proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT rodgersjeff proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT wittsjames proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT middletonrod proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT nicholasrichard proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT bezlyakvladimir proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT adlardnicholas proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT hachthomas proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT linescarol proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT vukusicsandra proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT soiluhanninenmerja proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT vanderwaltanneke proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT butzkuevenhelmut proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT iaffaldanopietro proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT trojanomaria proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT glaseranna proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT hillertjan proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers AT proportionandcharacteristicsofsecondaryprogressivemultiplesclerosisinfiveeuropeanregistriesusingobjectiveclassifiers |