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Real-world operation of multiple sclerosis centres in Central-Eastern European countries covering 107 million inhabitants

Z. Kokas, A. Járdánházy, D. Sandi, T. Biernacki, Z. Fricska-Nagy, J. Füvesi, H. Bartosik-Psujek, VB. Kes, T. Berger, A. Berthele, J. Drulovic, B. Hemmer, D. Horakova, AH. Ledinek, EK. Havrdova, M. Magyari, K. Rejdak, C. Tiu, P. Turcani, P....

. 2023 ; 69 (-) : 104406. [pub] 20221108

Language English Country Netherlands

Document type Review, Journal Article

Persistent link   https://www.medvik.cz/link/bmc23004755

BACKGROUND: In 2018 multiple sclerosis (MS) care unit (MSCU) recommendations were defined. Nevertheless, the information on MS care, and whether MS centres fulfil the international recommendation is limited. Thus our objectives were to assess whether centres meet the MSCU recommendations and gain a comprehensive overview of MS care in Central-Eastern European countries. METHODS: A self-report questionnaire assessing aspects of the MSCU recommendations, disease-modifying therapy (DMT) and registry use and the patient number was assembled and sent to nine Central-Eastern European countries. Furthermore, one Danish and one German centre were contacted as a reference. RESULTS: In 9/9 countries, MS care was pursued in centres by MS neurologists and MS nurses. In Austria and the Czech Republic, management of MS was conducted under strict regulations displaying a referral centre system, fundamentally similar to but independent of the MSCU criteria. Several centres fulfilled all aspects of the MSCU criteria, while others had similar insufficiencies consisting of a speech therapist, continence, pain and spasticity specialist, neuro-ophthalmologist, and oto-neurologist. In 9/9 countries, DMTs were reimbursed. However, some centres did not provide every available DMT. A national registry was available in 4/9 countries with mandatory registry use only in Austria and the Czech Republic. CONCLUSION: In countries where MSCU recommendations are not fulfilled, a strictly regulated centre system similar to the Austrian and Czech model with a registry-based quality control might ensure appropriate care for people with MS.

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$a Kokas, Zsófia $u Department of Neurology, Albert Szent-Györgyi Faculty of Medicine, Albert Szent-Györgyi Clinical Centre, University of Szeged, Szeged, Hungary
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$a Real-world operation of multiple sclerosis centres in Central-Eastern European countries covering 107 million inhabitants / $c Z. Kokas, A. Járdánházy, D. Sandi, T. Biernacki, Z. Fricska-Nagy, J. Füvesi, H. Bartosik-Psujek, VB. Kes, T. Berger, A. Berthele, J. Drulovic, B. Hemmer, D. Horakova, AH. Ledinek, EK. Havrdova, M. Magyari, K. Rejdak, C. Tiu, P. Turcani, P. Klivényi, ZT. Kincses, L. Vécsei, K. Bencsik
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$a BACKGROUND: In 2018 multiple sclerosis (MS) care unit (MSCU) recommendations were defined. Nevertheless, the information on MS care, and whether MS centres fulfil the international recommendation is limited. Thus our objectives were to assess whether centres meet the MSCU recommendations and gain a comprehensive overview of MS care in Central-Eastern European countries. METHODS: A self-report questionnaire assessing aspects of the MSCU recommendations, disease-modifying therapy (DMT) and registry use and the patient number was assembled and sent to nine Central-Eastern European countries. Furthermore, one Danish and one German centre were contacted as a reference. RESULTS: In 9/9 countries, MS care was pursued in centres by MS neurologists and MS nurses. In Austria and the Czech Republic, management of MS was conducted under strict regulations displaying a referral centre system, fundamentally similar to but independent of the MSCU criteria. Several centres fulfilled all aspects of the MSCU criteria, while others had similar insufficiencies consisting of a speech therapist, continence, pain and spasticity specialist, neuro-ophthalmologist, and oto-neurologist. In 9/9 countries, DMTs were reimbursed. However, some centres did not provide every available DMT. A national registry was available in 4/9 countries with mandatory registry use only in Austria and the Czech Republic. CONCLUSION: In countries where MSCU recommendations are not fulfilled, a strictly regulated centre system similar to the Austrian and Czech model with a registry-based quality control might ensure appropriate care for people with MS.
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$a Sandi, Dániel $u Department of Neurology, Albert Szent-Györgyi Faculty of Medicine, Albert Szent-Györgyi Clinical Centre, University of Szeged, Szeged, Hungary
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$a Biernacki, Tamás $u Department of Neurology, Albert Szent-Györgyi Faculty of Medicine, Albert Szent-Györgyi Clinical Centre, University of Szeged, Szeged, Hungary
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$a Bartosik-Psujek, Halina $u Department of Neurology, Institute of Medical Sciences, Medical College of Rzeszow University, Rzeszow, Poland
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$a Kes, Vanja Basic $u Department of Neurology, University Hospital Sestre Milosrdnice, Zagreb, Croatia
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$a Berger, Thomas $u Department of Neurology, Medical University of Vienna, Vienna, Austria
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$a Berthele, Achim $u Department of Neurology, School of Medicine, Technical University Munich, Munich, Germany
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$a Drulovic, Jelena $u Clinic of Neurology, University Clinical Centre of Serbia, Belgrade, Serbia
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$a Hemmer, Bernhard $u Department of Neurology, School of Medicine, Technical University Munich, Munich, Germany; Munich Cluster for System Neurology (SyNergy), Munich, Germany
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$a Horakova, Dana $u Department of Neurology and Center of Clinical Neuroscience, First Faculty of Medicine, Charles University and General University Hospital, Prague, Czech Republic
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$a Ledinek, Alenka Horvat $u Department of Neurology, University Clinical Centre Ljubljana, Ljubljana, Slovenia
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$a Havrdova, Eva Kubala $u Department of Neurology and Center of Clinical Neuroscience, First Faculty of Medicine, Charles University and General University Hospital, Prague, Czech Republic
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$a Magyari, Melinda $u Danish Multiple Sclerosis Center, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
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$a Rejdak, Konrad $u Department of Neurology, Medical University of Lublin, Lublin, Poland
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$a Tiu, Cristina $u Department of Neurology, University Hospital Bucharest, Bucharest, Romania
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$a Turcani, Peter $u 1st Department of Neurology, Faculty of Medicine, Comenius University and University Hospital Bratislava, Bratislava, Slovakia
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$a Vécsei, László $u Department of Neurology, Albert Szent-Györgyi Faculty of Medicine, Albert Szent-Györgyi Clinical Centre, University of Szeged, Szeged, Hungary; MTA-SZTE Neuroscience Research Group, Szeged, Hungary
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