Epidemiology and healthcare utilization in motor neuron disease
in Czechia

J 2025

Epidemiology and healthcare utilization in motor neuron disease in Czechia

KARA, Nazli Sila; Anna ZOUHAROVA; Hana Marie BROULIKOVA; Jiří JARKOVSKÝ; Lenka SLACHTOVA et al.

Základní údaje

Originální název

Epidemiology and healthcare utilization in motor neuron disease in Czechia

Autoři

KARA, Nazli Sila; Anna ZOUHAROVA; Hana Marie BROULIKOVA; Jiří JARKOVSKÝ a Lenka SLACHTOVA

Vydání

AMYOTROPHIC LATERAL SCLEROSIS AND FRONTOTEMPORAL DEGENERATION, ENGLAND, TAYLOR & FRANCIS LTD, 2025, 2167-8421

Další údaje

Jazyk

angličtina

Typ výsledku

Článek v odborném periodiku

Obor

30210 Clinical neurology

Stát vydavatele

Velká Británie a Severní Irsko

Utajení

není předmětem státního či obchodního tajemství

Odkazy

URL

Impakt faktor

Impact factor: 2.800 v roce 2024

Označené pro přenos do RIV

Ano

Kód RIV

RIV/00216224:14110/25:00143763

Organizační jednotka

Lékařská fakulta

Klíčová slova anglicky

Motor neuron disease; epidemiology; healthcare utilization; National Health Information System; real-world data

Štítky

14119612, rivok

Příznaky

Mezinárodní význam, Recenzováno

Změněno: 24. 2. 2026 13:35, Mgr. Tereza Miškechová

Anotace

V originále

The demographic and epidemiological profile of motor neuron disease (MND) in Czechia remains unknown, highlighting a critical gap; this study aims to examine the epidemiology of MND using population-based data. We conducted a 10-year retrospective study (2012-2022) to analyze prevalence, incidence, mortality, and healthcare utilization, including Riluzole treatment and multidisciplinary care. Our epidemiological findings were compared with the Global Burden of Disease estimates to highlight the importance of real-world data. Based on the data from 4583 patients with MND, the mean annual age-standardized incidence is 3.91 (95% confidence interval [CI] 3.73 - 4.09) per 100,000 individuals, and the mean annual age-standardized prevalence is 10.43 (95% CI 9.91 - 10.95) per 100,000 individuals. The incidence and mortality rates are stable, whereas the prevalence slowly increases. A total of 58.9% of the patients are male. Median survival time is 4.27 years. Most patients, 63.7%, die in hospital, followed by home 27.9%. From healthcare services, physiotherapy and rehabilitation are the most frequently utilized, with 67% of patients benefiting. Only 6.2% of patients use genetic counseling. Riluzole is used by 43% of patients with MND. Comparing incidence and prevalence rates with Global Burden Data estimates and local studies from European countries, we identified differences highlighting the need for real-world data. This study provides crucial real-world data on MND epidemiology and healthcare consumption in Czechia, shedding light on a previously under-researched area. These insights could navigate healthcare resource use and evidence-based policies, improving outcomes for patients and caregivers while deepening understanding of MND in Europe.

Citovat

KARA, Nazli Sila; Anna ZOUHAROVA; Hana Marie BROULIKOVA; Jiří JARKOVSKÝ a Lenka SLACHTOVA. Epidemiology and healthcare utilization in motor neuron disease in Czechia. AMYOTROPHIC LATERAL SCLEROSIS AND FRONTOTEMPORAL DEGENERATION. ENGLAND: TAYLOR & FRANCIS LTD, 2025, roč. 26, 5-6, s. 541-549. ISSN 2167-8421. Dostupné z: https://doi.org/10.1080/21678421.2025.2506441.

@article{2556454,
   author = {Kara, Nazli Sila and Zouharova, Anna and Broulikova, Hana Marie and Jarkovský, Jiří and Slachtova, Lenka},
   article_location = {ENGLAND},
   article_number = {5-6},
   doi = {https://doi.org/10.1080/21678421.2025.2506441},
   keywords = {Motor neuron disease; epidemiology; healthcare utilization; National Health Information System; real-world data},
   language = {eng},
   issn = {2167-8421},
   journal = {AMYOTROPHIC LATERAL SCLEROSIS AND FRONTOTEMPORAL DEGENERATION},
   title = {Epidemiology and healthcare utilization in motor neuron disease in Czechia},
   url = {https://www.tandfonline.com/doi/full/10.1080/21678421.2025.2506441},
   volume = {26},
   year = {2025}
}

TY  - JOUR
ID  - 2556454
AU  - Kara, Nazli Sila - Zouharova, Anna - Broulikova, Hana Marie - Jarkovský, Jiří - Slachtova, Lenka
PY  - 2025
TI  - Epidemiology and healthcare utilization in motor neuron disease in Czechia
JF  - AMYOTROPHIC LATERAL SCLEROSIS AND FRONTOTEMPORAL DEGENERATION
VL  - 26
IS  - 5-6
SP  - 541-549
EP  - 541-549
PB  - TAYLOR & FRANCIS LTD
SN  - 21678421
KW  - Motor neuron disease
KW  - epidemiology
KW  - healthcare utilization
KW  - National Health Information System
KW  - real-world data
UR  - https://www.tandfonline.com/doi/full/10.1080/21678421.2025.2506441
N2  - The demographic and epidemiological profile of motor neuron disease (MND) in Czechia remains unknown, highlighting a critical gap; this study aims to examine the epidemiology of MND using population-based data. We conducted a 10-year retrospective study (2012-2022) to analyze prevalence, incidence, mortality, and healthcare utilization, including Riluzole treatment and multidisciplinary care. Our epidemiological findings were compared with the Global Burden of Disease estimates to highlight the importance of real-world data. Based on the data from 4583 patients with MND, the mean annual age-standardized incidence is 3.91 (95% confidence interval [CI] 3.73 - 4.09) per 100,000 individuals, and the mean annual age-standardized prevalence is 10.43 (95% CI 9.91 - 10.95) per 100,000 individuals. The incidence and mortality rates are stable, whereas the prevalence slowly increases. A total of 58.9% of the patients are male. Median survival time is 4.27 years. Most patients, 63.7%, die in hospital, followed by home 27.9%. From healthcare services, physiotherapy and rehabilitation are the most frequently utilized, with 67% of patients benefiting. Only 6.2% of patients use genetic counseling. Riluzole is used by 43% of patients with MND. Comparing incidence and prevalence rates with Global Burden Data estimates and local studies from European countries, we identified differences highlighting the need for real-world data. This study provides crucial real-world data on MND epidemiology and healthcare consumption in Czechia, shedding light on a previously under-researched area. These insights could navigate healthcare resource use and evidence-based policies, improving outcomes for patients and caregivers while deepening understanding of MND in Europe.
ER  -

KARA, Nazli Sila; Anna ZOUHAROVA; Hana Marie BROULIKOVA; Jiří JARKOVSKÝ a Lenka SLACHTOVA. Epidemiology and healthcare utilization in motor neuron disease in Czechia. \textit{AMYOTROPHIC LATERAL SCLEROSIS AND FRONTOTEMPORAL DEGENERATION}. ENGLAND: TAYLOR \&{} FRANCIS LTD, 2025, roč.~26, 5-6, s.~541-549. ISSN~2167-8421. Dostupné z: https://doi.org/10.1080/21678421.2025.2506441.

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