Do Hungarian multiple sclerosis care units fulfil international criteria?

Abstract

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.

Szklerózis multiplex • Multiple Sclerosis

“…Magyar Tudomány 184(2023)1 mok feladata felmérni az adott tagországban, hogy az SM-ellátórendszer mennyiben felel meg a már említett ajánlásoknak. Klinikánk SM-munkacsoportja 2020-ban a DSNS javaslata és a 2019-ben megfogalmazott nemzetközi centrum feltételrendszer protokollja alapján felmérte a magyarországi SM-ellátóegységek működését (Kokas et al, 2022). A vizsgálatban az akkori harmincegy centrumból huszonkilenc vett részt.…”

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

“…According to primarily the MSCU recommendation and the therapeutic guideline, a questionnaire was assembled focusing on four main aspects: instrumental and personnel requirements of an MSCU, DMT use, patient number, and registry use (Kokas et al, 2022;Montalban et al, 2018a,b;Soelberg Sorensen et al, 2019).…”

“…The questionnaires were sent via e-mail to the participating centres (Kokas et al, 2022;Montalban et al, 2018a,b;Soelberg Sorensen et al, 2019). Parallel to collecting and summarizing data from questionnaires, information regarding the management of MS, DMT reimbursement, prevalence estimates and country population data were also researched.…”

“…Since 2013 patient data should be recorded in the ReMus registry from which annual reports, and regular epidemiological and financial statistics can be obtained.Certification should be renewed every 5 years; moreover, the Czech Ministry of Health should be notified in writing in case of changing conditions.DMTs are available free of charge. Hungary (Kokas et al, 2022, DMT, and physical status including EDSS. These conditions were determined over 20 years ago due to the high retail price of the only therapeutic option available at the time (IFN-β).…”

“…The first and so far only adaptation stems from Latin America (Cristiano et al, 2021). Except for our previous work conducted in Hungary, no surveys assessed whether the existing centres fulfil the MSCU criteria (Kokas et al, 2022). Presumably, in some countries, medical care of persons with MS (pwMS) is part of general neurology.…”