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author Kokas, Zsófia
Sandi, Dániel
Fricska-Nagy, Zsanett
Füvesi, Judit
Biernacki, Tamás
Köves, Ágnes
Fazekas, Ferenc
Birkás, Adrienne Jóri
Katona, Gabriella
Kovács, Krisztina
Milanovich, Dániel
Dobos, Enikő
Kapás, István
Jakab, Gábor
Csépány, Tünde
Bense, Erzsébet
Mátyás, Klotild
Rum, Gábor
Szolnoki, Zoltán
Deme, István
Jobbágy, Zita
Kriston, Dávid
Gerócs, Zsuzsanna
Diószeghy, Péter
Bors, László
Varga, Adrián
Kerényi, Levente
Molnár, Gabriella
Kristóf, Piroska
Nagy, Zsuzsanna Ágnes
Sátori, Mária
Imre, Piroska
Péntek, Szilvia
Klivényi, Péter
Kincses, Zsigmond Tamás
Vécsei, László
Bencsik, Krisztina
author_facet Kokas, Zsófia
Sandi, Dániel
Fricska-Nagy, Zsanett
Füvesi, Judit
Biernacki, Tamás
Köves, Ágnes
Fazekas, Ferenc
Birkás, Adrienne Jóri
Katona, Gabriella
Kovács, Krisztina
Milanovich, Dániel
Dobos, Enikő
Kapás, István
Jakab, Gábor
Csépány, Tünde
Bense, Erzsébet
Mátyás, Klotild
Rum, Gábor
Szolnoki, Zoltán
Deme, István
Jobbágy, Zita
Kriston, Dávid
Gerócs, Zsuzsanna
Diószeghy, Péter
Bors, László
Varga, Adrián
Kerényi, Levente
Molnár, Gabriella
Kristóf, Piroska
Nagy, Zsuzsanna Ágnes
Sátori, Mária
Imre, Piroska
Péntek, Szilvia
Klivényi, Péter
Kincses, Zsigmond Tamás
Vécsei, László
Bencsik, Krisztina
author_sort Kokas, Zsófia
collection PubMed
description A PATIENTS: 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. OBJECTIVE: To assess whether Hungarian care units fulfil international criteria. METHODS: 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. RESULTS: 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. CONCLUSION: 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 pubmed-88936322022-03-04 Do Hungarian multiple sclerosis care units fulfil international criteria? Kokas, Zsófia Sandi, Dániel Fricska-Nagy, Zsanett Füvesi, Judit Biernacki, Tamás Köves, Ágnes Fazekas, Ferenc Birkás, Adrienne Jóri Katona, Gabriella Kovács, Krisztina Milanovich, Dániel Dobos, Enikő Kapás, István Jakab, Gábor Csépány, Tünde Bense, Erzsébet Mátyás, Klotild Rum, Gábor Szolnoki, Zoltán Deme, István Jobbágy, Zita Kriston, Dávid Gerócs, Zsuzsanna Diószeghy, Péter Bors, László Varga, Adrián Kerényi, Levente Molnár, Gabriella Kristóf, Piroska Nagy, Zsuzsanna Ágnes Sátori, Mária Imre, Piroska Péntek, Szilvia Klivényi, Péter Kincses, Zsigmond Tamás Vécsei, László Bencsik, Krisztina PLoS One Research Article A PATIENTS: 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. OBJECTIVE: To assess whether Hungarian care units fulfil international criteria. METHODS: 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. RESULTS: 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. CONCLUSION: 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. Public Library of Science 2022-03-03 /pmc/articles/PMC8893632/ /pubmed/35239686 http://dx.doi.org/10.1371/journal.pone.0264328 Text en © 2022 Kokas et al https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Kokas, Zsófia
Sandi, Dániel
Fricska-Nagy, Zsanett
Füvesi, Judit
Biernacki, Tamás
Köves, Ágnes
Fazekas, Ferenc
Birkás, Adrienne Jóri
Katona, Gabriella
Kovács, Krisztina
Milanovich, Dániel
Dobos, Enikő
Kapás, István
Jakab, Gábor
Csépány, Tünde
Bense, Erzsébet
Mátyás, Klotild
Rum, Gábor
Szolnoki, Zoltán
Deme, István
Jobbágy, Zita
Kriston, Dávid
Gerócs, Zsuzsanna
Diószeghy, Péter
Bors, László
Varga, Adrián
Kerényi, Levente
Molnár, Gabriella
Kristóf, Piroska
Nagy, Zsuzsanna Ágnes
Sátori, Mária
Imre, Piroska
Péntek, Szilvia
Klivényi, Péter
Kincses, Zsigmond Tamás
Vécsei, László
Bencsik, Krisztina
Do Hungarian multiple sclerosis care units fulfil international criteria?
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?
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8893632/
https://www.ncbi.nlm.nih.gov/pubmed/35239686
http://dx.doi.org/10.1371/journal.pone.0264328
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