Cíl: Cílem této práce bylo zjistit distribuci a rozsah péče o děti s podezřením na získaný demyelinizační syndrom (zahrnující akutní diseminovanou encefalomyelitidu, klinicky izolovaný syndrom, roztroušenou sklerózu a okruh neuromyelitis optica) a identifikovat oblasti ke zkvalitnění péče v ČR. Soubor a metodika: Elektronické dotazníkové šetření na všech lůžkových pracovištích dětské neurologie (n = 7) a pediatrie (n = 22) na úrovni krajů a fakultních nemocnic. Odpovědi jsme získali ze všech oslovených nemocnic. Výsledky: Na péči se podílí všech sedm pracovišť dětské neurologie a deset pediatrií. Všichni disponují potřebnými diagnostickými možnostmi, alw terapeutické možnosti se liší. Identifikovali jsme konkrétní rozdíly v diagnostickém přístupu – v indikaci a interpretaci vyšetření a ve využití aktuálních diagnostických kritérií. V šesti krajích je péče primárně směřována na lůžka dětské neurologie, v ostatních osmi krajích na lůžka pediatrická s konziliárním dětským neurologem. Složitější případy jsou překládány na dětské neurologie, kde je diagnostický přístup komplexnější a terapeutické možnosti rozsáhlejší. Závěr: Péče o děti se získaným demyelinizačním syndromem je v ČR na vysoké úrovni, ale není standardizována. Nejlépe zajištěná onemocnění jsou RS a okruh neuromyelitis optica, pro která fungují centra vysoce specializované péče. Vzhledem k distribuci péče musí specializovaná edukace cílit i na pediatry a konziliární dětské neurology.
Aim: The aim of this study was to investigate the distribution and extent of healthcare provided to children with a suspected acquired demyelinating syndrome (including acute disseminated encephalomyelitis, clinically isolated syndrome, multiple sclerosis and neuromyelitis optica spectrum disorder) and to identify areas for care improvement in the Czech Republic. Patients and methodology: Electronic questionnaire survey at all inpatient departments of pediatric neurology (N = 7) and pediatric departments (N = 22) at the regional and university hospital level. Responses were obtained from all contacted hospitals. Results: All inpatient departments of pediatric neurology and 10 pediatric departments are involved in the care of patients. All have the necessary diagnostic methods available, but therapeutic options differ. We identified specific differences in the diagnostic approach -in the indication and interpretation of examinations and in the use of current diagnostic criteria. In six regions, care is provided primarily by departments of pediatric neurology. In the remaining eight regions, patients are admitted to pediatric departments with an available pediatric neurology consultant. More complex cases are transferred to pediatric neurology departments, where the diagnostic approach is more comprehensive and the therapeutic options are more extensive. Conclusion: In the Czech Republic, healthcare for children with an acquired demyelinating syndrome is at a high level, but it is not standardized. The most appropriate standard of care is provided in specialized care centers for multiple sclerosis and neuromyelitis optica spectrum disorders. Given the distribution of care, specialized education must also include pediatricians and pediatric neurology consultants.
- MeSH
- demyelinizační nemoci * terapie MeSH
- dítě MeSH
- lidé MeSH
- management nemoci MeSH
- management péče o pacienta * organizace a řízení MeSH
- neuromyelitis optica terapie MeSH
- průzkumy a dotazníky MeSH
- roztroušená skleróza terapie MeSH
- terciární prevence organizace a řízení MeSH
- Check Tag
- dítě MeSH
- lidé MeSH
- Publikační typ
- práce podpořená grantem MeSH
Cieľ: Zistiť priemernú intenzitu aktuálne pociťovanej bolesti, jej vplyv na behaviorálnu a funkčnú oblasť života podľa Medical Outcomes Study (MOS) Pain Effects Scale (PES) a aktuálne pociťovanú celkovú kvalitu života podľa Multiple Sclerosis Quality of Life 54 (MSQoL-54). Súbor a metodika: V kvantitatívnej observačnej štúdii participovalo 108 pacientov s RS. Dotazník obsahoval Vizuálnu analógovú škálu bolesti (VAS) na posúdenie intenzity aktuálnej bolesti, MOS PES na zistenie vplyvu bolesti na vybrané funkčné a behaviorálne oblasti kvality života, subjektívne vnímanie celkovej kvality života položkou nástroja MSQoL-54. Opisnou štatistikou boli vyhodnotené priemery a vzťahy Spearmanovým korelačným koeficientom. Výsledky: Pacienti uvádzali priemernú stredne silnú intenzitu bolesti podľa VAS (M = 3,8). Farmakoterapiu užívalo 66,7 % pacientov s efektom občasnej a častej minimalizácie bolesti; najčastejšie nesteroidné antiflogistiká (n = 55). Nefarmakologické metódy využívalo 36 pacientov s občasnou a častou minimalizáciou bolesti; najviac cvičenie. MOS PES ukázal mierny vplyv bolesti na funkčné a behaviorálne oblasti kvality života. Podľa MSQoL-54 bola celková kvalita života hodnotená ako uspokojivá (M = 5,8) a so stúpajúcou intenzitou bolesti sa znižovala. Zvyšujúca intenzita bolesti podľa MOS PES negatívne ovplyvňovala náladu, schopnosť chodiť, spánok, bežné činnosti a rekreačné aktivity. Záver: Objektivizácia bolesti a identifikácia jej vplyvu na kvalitu života pomôže zefektívniť individualizovanú liečbu RS.
Aim: To determine the mean intensity of currently experienced pain, its impact on behavioral and functional domains of life according to the The Medical Outcomes Study (MOS) Pain Effects Scale (PES) and currently experienced overall quality of life according to the Multiple Sclerosis Quality of Life 54 (MSQoL-54) in MS. Patients and methods: The quantitative observational study had 108 MS patients. The questionnaire included the Visual Analogue Scale (VAS) to assess the intensity of current pain, MOS PES to determine the impact of pain on selected functional and behavioral areas of the quality of life, and subjective perception of the overall quality of life using the item of the MSQoL-54. Descriptive statistics was used to evaluate averages and Spearman’s correlation coefficient to detect any relationship. Results: Patients reported a mean moderate pain intensity according to the VAS (M = 3.8). Pharmacotherapy was used by 66.7% of patients with the effect of occasional and frequent pain minimization; most commonly used drugs were nonsteroidal antiphlogistics (N = 55). Non-pharmacological methods were used by 36 patients with intermittent and frequent pain minimization; most used method was exercise. MOS PES showed a moderate effect of pain on functional and behavioral quality of life domains. According to the MSQoL-54, overall quality of life was rated as satisfactory (M = 5.8), and was rated lower with increasing pain intensity. Increasing pain intensity according to the MOS PES negatively affected mood, walking ability, sleep, activities of daily living, and recreational activities. Conclusion: Objectification of pain and identification of its impact on quality of life will help to improve individualized MS treatment.
- MeSH
- analgetika terapeutické užití MeSH
- antikonvulziva terapeutické užití MeSH
- bolest * etiologie MeSH
- cvičení MeSH
- hodnotící studie jako téma MeSH
- kvalita života * psychologie MeSH
- lidé MeSH
- management bolesti metody MeSH
- měření bolesti metody MeSH
- průzkumy a dotazníky MeSH
- roztroušená skleróza * komplikace psychologie terapie MeSH
- Check Tag
- lidé MeSH
Multiple sclerosis (MS) is a devastating immune-mediated disorder of the central nervous system resulting in progressive disability accumulation. As there is no cure available yet for MS, the primary therapeutic objective is to reduce relapses and to slow down disability progression as early as possible during the disease to maintain and/or improve health-related quality of life. However, optimizing treatment for people with MS (pwMS) is complex and challenging due to the many factors involved and in particular, the high degree of clinical and sub-clinical heterogeneity in disease progression among pwMS. In this paper, we discuss these many different challenges complicating treatment optimization for pwMS as well as how a shift towards a more pro-active, data-driven and personalized medicine approach could potentially improve patient outcomes for pwMS. We describe how the 'Clinical Impact through AI-assisted MS Care' (CLAIMS) project serves as a recent example of how to realize such a shift towards personalized treatment optimization for pwMS through the development of a platform that offers a holistic view of all relevant patient data and biomarkers, and then using this data to enable AI-supported prognostic modelling.
BACKGROUND: For persons with multiple sclerosis (pwMS), exercise is known to be safe and effective at treating several symptoms and it may even be disease-modifying. However, exercise can trigger heat intolerance, exercise-induced heat sensitivity (EIHS), which may cause some pwMS to refrain from exercise. No review has yet summarized the existing knowledge on EIHS in pwMS. Therefore, the purpose of the present review was to clarify the terminology, summarize both the prevalence of EIHS and the current knowledge of underlying mechanisms, and provide an overview of existing treatment options and clinical management of EIHS in pwMS. METHODS: A scoping review was performed. RESULTS: As no clear definition could be identified in the literature, we propose a definition of EIHS. Aspects related to EIHS are reported in 29-80 % of all pwMS. The mechanisms underlying EIHS are not well understood but seem to include axon demyelination, CNS lesions, abnormal sudomotor function and sweating, abnormal afferent thermosensory function, disease stability, and abnormal neuropsychological responses. The severity of EIHS depends on the applied exercise modality, intensity, and format, and can be further reduced when applying different cooling interventions or garments before and/or during exercise. CONCLUSION: EIHS appears frequently in pwMS, but the underlying mechanisms are still only sparsely understood. EIHS severity depends on exercise-related factors and can be reduced by cooling interventions.
- MeSH
- cvičení * fyziologie MeSH
- lidé MeSH
- prevalence MeSH
- roztroušená skleróza * terapie patofyziologie epidemiologie MeSH
- vysoká teplota škodlivé účinky MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- přehledy MeSH
BACKGROUND: Functional neurological disorder (FND) is a common cause of neurological disability. Despite recent advances in pathophysiological understanding and treatments, application of this knowledge to clinical practice is variable and limited. OBJECTIVE: Our aim was to provide an expert overview of the state of affairs of FND practice across Europe, focusing on education and training, access to specialized care, reimbursement and disability policies, and academic and patient-led representation of people with FND. METHODS: We conducted a survey across Europe, featuring one expert per country. We asked experts to compare training and services for people with FND to those provided to people with multiple sclerosis (MS). RESULTS: Responses from 25 countries revealed that only five included FND as a mandatory part of neurological training, while teaching about MS was uniformly included. FND was part of final neurology examinations in 3/17 countries, unlike MS that was included in all 17. Seventeen countries reported neurologists with an interest in FND but the estimated mean ratio of FND-interested neurologists to MS neurologists was 1:20. FND coding varied, with psychiatric coding for FND impacting treatment access and disability benefits in the majority of countries. Twenty countries reported services refusing to see FND patients. Eight countries reported an FND special interest group or network; 11 reported patient-led organizations. CONCLUSIONS: FND is largely a marginal topic within European neurology training and there is limited access to specialized care and disability benefits for people with FND across Europe. We discuss how this issue can be addressed at an academic, healthcare and patient organization level.
- MeSH
- dostupnost zdravotnických služeb MeSH
- lidé MeSH
- nemoci nervového systému terapie MeSH
- neurologie výchova MeSH
- neurologové MeSH
- roztroušená skleróza terapie MeSH
- zdravotní politika * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Evropa MeSH
INTRODUCTION: One of the most debilitating problems encountered by people with multiple sclerosis (MS) is the loss of balance and coordination. Our study aimed to comprehensively evaluate the effectiveness of one year of Tai-chi exercise in patients with MS using both subjective and objective methods, including posturography. METHODS: This was a single-group longitudinal one-year study performed from the 1st of January 2019 to the 1st of January 2020. The primary outcomes of interest were the Mini-Balance Evaluation Systems Test (Mini-BESTest) and static posturography measures as objective methods to detect subtle changes associated with postural control/balance impairment. Secondary outcomes were measures of depression, anxiety, cognitive performance, and quality of life. All objective and subjective parameters were assessed four times: at baseline, and after three, six and 12 months of regular Tai-chi training. The difference was calculated as a subtraction of baseline values from every timepoint value for each measurement. If the normality test was passed, parametric one-sample t-test was used, if failed, Wilcoxon signed ranks test was used to test the difference between the baseline and each timepoint. Alpha was set to 0.017 using Bonferroni correction for multiple comparisons. RESULTS: Out of 25 patients with MS enrolled, 15 women with MS (mean age 44.27 years) were included for statistical analyses after completing the 12-month program. After 12 months, significant improvements were found in all objective balance and gait tests: Mini-BESTest (p<0.001), static posturography measures (total area of the centre of foot pressure - TA; p = 0.015), 25 Feet Walk Test (25FWT; p = 0.001), anxiety (Beck Anxiety Inventory - BAI; p = 0.005) and cognition tests (Paced Auditory Serial Addition Test - PASAT; p = 0.003). Measures of depression (Beck Depression Inventory - BDI; p = 0.071), cognition (Symbol Digit Modalities Test - SDMT; p = 0.079), and health-related quality of life (European Quality of Life 5-Dimensions Questionnaire - EQ-5D-5L; p = 0.095) showed a trend of improvement but were not significant, which could be the result of a small sample and increased bias due the type II error. CONCLUSION: According to these preliminary results, this study indicates the possible beneficial effects of long-term Tai-chi training on patients with MS. Although these findings need to be confirmed by further studies with a larger sample of participants of both genders and require more rigorous randomized controlled trials (RCT) design, our findings support the recommendation of regular and long-term Tai-chi exercise in patients with MS. GOV IDENTIFIER (RETROSPECTIVELY REGISTERED): NCT05474209.
- MeSH
- dospělí MeSH
- kognice MeSH
- kvalita života MeSH
- lidé MeSH
- posturální rovnováha MeSH
- prospektivní studie MeSH
- roztroušená skleróza * komplikace terapie MeSH
- taiči * MeSH
- Check Tag
- dospělí MeSH
- lidé MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- MeSH
- bolest farmakoterapie MeSH
- lidé MeSH
- roztroušená skleróza * terapie MeSH
- sexuální dysfunkce fyziologická farmakoterapie MeSH
- svalová spasticita farmakoterapie MeSH
- únava farmakoterapie MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- přehledy MeSH
Multiple Sclerosis (MS) management in individuals aged 55 and above presents unique challenges due to the complex interaction between aging, comorbidities, immunosenescence, and MS pathophysiology. This comprehensive review explores the evolving landscape of MS in older adults, including the increased incidence and prevalence of MS in this age group, the shift in disease phenotypes from relapsing-remitting to progressive forms, and the presence of multimorbidity and polypharmacy. We aim to provide an updated review of the available evidence of disease-modifying treatments (DMTs) in older patients, including the efficacy and safety of existing therapies, emerging treatments such as Bruton tyrosine kinase (BTKs) inhibitors and those targeting remyelination and neuroprotection, and the critical decisions surrounding the initiation, de-escalation, and discontinuation of DMTs. Non-pharmacologic approaches, including physical therapy, neuromodulation therapies, cognitive rehabilitation, and psychotherapy, are also examined for their role in holistic care. The importance of MS Care Units and advance care planning are explored as a cornerstone in providing patient-centric care, ensuring alignment with patient preferences in the disease trajectory. Finally, the review emphasizes the need for personalized management and continuous monitoring of MS patients, alongside advocating for inclusive study designs in clinical research to improve the management of this growing patient demographic.
- MeSH
- komorbidita MeSH
- lidé středního věku MeSH
- lidé MeSH
- management nemoci MeSH
- roztroušená skleróza * terapie MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- stárnutí imunologie MeSH
- věkové faktory MeSH
- Check Tag
- lidé středního věku MeSH
- lidé MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- přehledy MeSH
