Do Hungarian multiple sclerosis care units fulfil international criteria?

<h4>A patients</h4> Because of the past 3 decades’ extensive research, several disease modifying therapies became available, thus a paradigm change is multiple sclerosis care was necessary. In 2018 a therapeutic guideline was created recommending that treatment of persons with multiple s...

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Main Authors: Zsófia Kokas, Dániel Sandi, Zsanett Fricska-Nagy, Judit Füvesi, Tamás Biernacki, Ágnes Köves, Ferenc Fazekas, Adrienne Jóri Birkás, Gabriella Katona, Krisztina Kovács, Dániel Milanovich, Enikő Dobos, István Kapás, Gábor Jakab, Tünde Csépány, Erzsébet Bense, Klotild Mátyás, Gábor Rum, Zoltán Szolnoki, István Deme, Zita Jobbágy, Dávid Kriston, Zsuzsanna Gerócs, Péter Diószeghy, László Bors, Adrián Varga, Levente Kerényi, Gabriella Molnár, Piroska Kristóf, Zsuzsanna Ágnes Nagy, Mária Sátori, Piroska Imre, Szilvia Péntek, Péter Klivényi, Zsigmond Tamás Kincses, László Vécsei, Krisztina Bencsik
Format: Article
Language:English
Published: Public Library of Science (PLoS) 2022-01-01
Series:PLoS ONE
Online Access:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8893632/?tool=EBI
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author Zsófia Kokas
Dániel Sandi
Zsanett Fricska-Nagy
Judit Füvesi
Tamás Biernacki
Ágnes Köves
Ferenc Fazekas
Adrienne Jóri Birkás
Gabriella Katona
Krisztina Kovács
Dániel Milanovich
Enikő Dobos
István Kapás
Gábor Jakab
Tünde Csépány
Erzsébet Bense
Klotild Mátyás
Gábor Rum
Zoltán Szolnoki
István Deme
Zita Jobbágy
Dávid Kriston
Zsuzsanna Gerócs
Péter Diószeghy
László Bors
Adrián Varga
Levente Kerényi
Gabriella Molnár
Piroska Kristóf
Zsuzsanna Ágnes Nagy
Mária Sátori
Piroska Imre
Szilvia Péntek
Péter Klivényi
Zsigmond Tamás Kincses
László Vécsei
Krisztina Bencsik
author_facet Zsófia Kokas
Dániel Sandi
Zsanett Fricska-Nagy
Judit Füvesi
Tamás Biernacki
Ágnes Köves
Ferenc Fazekas
Adrienne Jóri Birkás
Gabriella Katona
Krisztina Kovács
Dániel Milanovich
Enikő Dobos
István Kapás
Gábor Jakab
Tünde Csépány
Erzsébet Bense
Klotild Mátyás
Gábor Rum
Zoltán Szolnoki
István Deme
Zita Jobbágy
Dávid Kriston
Zsuzsanna Gerócs
Péter Diószeghy
László Bors
Adrián Varga
Levente Kerényi
Gabriella Molnár
Piroska Kristóf
Zsuzsanna Ágnes Nagy
Mária Sátori
Piroska Imre
Szilvia Péntek
Péter Klivényi
Zsigmond Tamás Kincses
László Vécsei
Krisztina Bencsik
author_sort Zsófia Kokas
collection DOAJ
description <h4>A patients</h4> Because of the past 3 decades’ extensive research, several disease modifying therapies became available, thus a paradigm change is multiple sclerosis care was necessary. In 2018 a therapeutic guideline was created recommending that treatment of persons with multiple sclerosis should take place in specified care units where the entire spectrum of disease modifying therapies is available, patient monitoring is ensured, and therapy side effects are detected and treated promptly. In 2019 multiple sclerosis care unit criteria were developed, emphasizing personnel and instrumental requirements to provide most professional care. However, no survey was conducted assessing the real-world adaptation of these criteria. <h4>Objective</h4> To assess whether Hungarian care units fulfil international criteria. <h4>Methods</h4> A self-report questionnaire was assembled based on international guidelines and sent to Hungarian care units focusing on 3 main aspects: personnel and instrumental background, disease-modifying therapy use, number of people living with multiple sclerosis receiving care in care units. Data on number of persons with multiple sclerosis were compared to Hungarian prevalence estimates. Descriptive statistics were used to analyse data. <h4>Results</h4> Out of 27 respondent care units, 3 fulfilled minimum requirements and 7 fulfilled minimum and recommended requirements. The least prevalent neighbouring specialties were spasticity and pain specialist, and neuro-ophthalmologist and oto-neurologist. Only 15 centres used all available disease modifying therapies. A total number of 7213 people with multiple sclerosis received care in 27 respondent centres. Compared to prevalence estimates, 2500 persons with multiple sclerosis did not receive multiple sclerosis specific care in Hungary. <h4>Conclusion</h4> Less than half of Hungarian care units provided sufficient care for people living with multiple sclerosis. Care units employing fewer neighbouring specialties, might have difficulties diagnosing and providing appropriate care for persons with multiple sclerosis, especially for people with progressive disease course, contributing to the reported low number of persons living with multiple sclerosis.
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spelling doaj.art-b74f88ce35424d3a83206f1e4beda0ee2022-12-21T19:58:15ZengPublic Library of Science (PLoS)PLoS ONE1932-62032022-01-01173Do Hungarian multiple sclerosis care units fulfil international criteria?Zsófia KokasDániel SandiZsanett Fricska-NagyJudit FüvesiTamás BiernackiÁgnes KövesFerenc FazekasAdrienne Jóri BirkásGabriella KatonaKrisztina KovácsDániel MilanovichEnikő DobosIstván KapásGábor JakabTünde CsépányErzsébet BenseKlotild MátyásGábor RumZoltán SzolnokiIstván DemeZita JobbágyDávid KristonZsuzsanna GerócsPéter DiószeghyLászló BorsAdrián VargaLevente KerényiGabriella MolnárPiroska KristófZsuzsanna Ágnes NagyMária SátoriPiroska ImreSzilvia PéntekPéter KlivényiZsigmond Tamás KincsesLászló VécseiKrisztina Bencsik<h4>A patients</h4> Because of the past 3 decades’ extensive research, several disease modifying therapies became available, thus a paradigm change is multiple sclerosis care was necessary. In 2018 a therapeutic guideline was created recommending that treatment of persons with multiple sclerosis should take place in specified care units where the entire spectrum of disease modifying therapies is available, patient monitoring is ensured, and therapy side effects are detected and treated promptly. In 2019 multiple sclerosis care unit criteria were developed, emphasizing personnel and instrumental requirements to provide most professional care. However, no survey was conducted assessing the real-world adaptation of these criteria. <h4>Objective</h4> To assess whether Hungarian care units fulfil international criteria. <h4>Methods</h4> A self-report questionnaire was assembled based on international guidelines and sent to Hungarian care units focusing on 3 main aspects: personnel and instrumental background, disease-modifying therapy use, number of people living with multiple sclerosis receiving care in care units. Data on number of persons with multiple sclerosis were compared to Hungarian prevalence estimates. Descriptive statistics were used to analyse data. <h4>Results</h4> Out of 27 respondent care units, 3 fulfilled minimum requirements and 7 fulfilled minimum and recommended requirements. The least prevalent neighbouring specialties were spasticity and pain specialist, and neuro-ophthalmologist and oto-neurologist. Only 15 centres used all available disease modifying therapies. A total number of 7213 people with multiple sclerosis received care in 27 respondent centres. Compared to prevalence estimates, 2500 persons with multiple sclerosis did not receive multiple sclerosis specific care in Hungary. <h4>Conclusion</h4> Less than half of Hungarian care units provided sufficient care for people living with multiple sclerosis. Care units employing fewer neighbouring specialties, might have difficulties diagnosing and providing appropriate care for persons with multiple sclerosis, especially for people with progressive disease course, contributing to the reported low number of persons living with multiple sclerosis.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8893632/?tool=EBI
spellingShingle Zsófia Kokas
Dániel Sandi
Zsanett Fricska-Nagy
Judit Füvesi
Tamás Biernacki
Ágnes Köves
Ferenc Fazekas
Adrienne Jóri Birkás
Gabriella Katona
Krisztina Kovács
Dániel Milanovich
Enikő Dobos
István Kapás
Gábor Jakab
Tünde Csépány
Erzsébet Bense
Klotild Mátyás
Gábor Rum
Zoltán Szolnoki
István Deme
Zita Jobbágy
Dávid Kriston
Zsuzsanna Gerócs
Péter Diószeghy
László Bors
Adrián Varga
Levente Kerényi
Gabriella Molnár
Piroska Kristóf
Zsuzsanna Ágnes Nagy
Mária Sátori
Piroska Imre
Szilvia Péntek
Péter Klivényi
Zsigmond Tamás Kincses
László Vécsei
Krisztina Bencsik
Do Hungarian multiple sclerosis care units fulfil international criteria?
PLoS ONE
title Do Hungarian multiple sclerosis care units fulfil international criteria?
title_full Do Hungarian multiple sclerosis care units fulfil international criteria?
title_fullStr Do Hungarian multiple sclerosis care units fulfil international criteria?
title_full_unstemmed Do Hungarian multiple sclerosis care units fulfil international criteria?
title_short Do Hungarian multiple sclerosis care units fulfil international criteria?
title_sort do hungarian multiple sclerosis care units fulfil international criteria
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8893632/?tool=EBI
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