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Narcolepsy with cataplexy is a rare disease with an estimated prevalence of 0.02% in European populations. Narcolepsy shares many features of rare disorders, in particular the lack of awareness of the disease with serious consequences for healthcare supply. Similar to other rare diseases, only a few European countries have registered narcolepsy cases in databases of the International Classification of Diseases or in registries of the European health authorities. A promising approach to identify disease-specific adverse health effects and needs in healthcare delivery in the field of rare diseases is to establish a distributed expert network. A first and important step is to create a database that allows collection, storage and dissemination of data on narcolepsy in a comprehensive and systematic way. Here, the first prospective web-based European narcolepsy database hosted by the European Narcolepsy Network is introduced. The database structure, standardization of data acquisition and quality control procedures are described, and an overview provided of the first 1079 patients from 18 European specialized centres. Due to its standardization this continuously increasing data pool is most promising to provide a better insight into many unsolved aspects of narcolepsy and related disorders, including clear phenotype characterization of subtypes of narcolepsy, more precise epidemiological data and knowledge on the natural history of narcolepsy, expectations about treatment effects, identification of post-marketing medication side-effects, and will contribute to improve clinical trial designs and provide facilities to further develop phase III trials.
- MeSH
- databáze faktografické * normy MeSH
- dospělí MeSH
- fenotyp MeSH
- internet MeSH
- kataplexie farmakoterapie epidemiologie MeSH
- lidé středního věku MeSH
- lidé MeSH
- mladiství MeSH
- mladý dospělý MeSH
- narkolepsie * farmakoterapie epidemiologie MeSH
- postmarketingový dozor MeSH
- prospektivní studie MeSH
- registrace * normy MeSH
- řízení kvality MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- šíření informací MeSH
- vzácné nemoci farmakoterapie epidemiologie MeSH
- Check Tag
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mladiství MeSH
- mladý dospělý MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Evropa epidemiologie MeSH
Úvod: Spokojenost pacienta s tišením bolesti je výsledkem srovnání jeho očekávání a vnímané reality. Ovlivňuje ji mnoho faktorů. Klíčovým je management bolesti, tj. proces zaměřený na eliminaci bolesti. Cíl: Předložit informace z dostupného primárního výzkumu zabývajícího se spokojeností dospělých hospitalizovaných pacientů s managementem akutní pooperační bolesti. Metody: Byla provedena literární rešerše – po stanovení klíčových slov, zařazovacích/vyřazovacích kritérií, časového období a rešeršní otázky byly prohledány dvě databáze zaměřené na ošetřovatelství. Relevantní články byly vybrány podle názvů, abstraktů a následně podle plných textů. Výsledky: Byly nalezeny čtyři zahraniční studie na dané téma. Výsledky poukazují na signifikantní vztahy mezi spokojeností pacientů s managementem bolesti a celkovým komfortem, přístupem personálu, empatií, informovaností, délkou čekání na analgetikum a dobou, za kterou začne analgetikum účinkovat. Závěr: Čtyři nalezené studie upozorňují, že spokojenost pacientů s managementem bolesti ovlivňuje mnoho faktorů, přičemž míra bolesti nemusí být tím klíčovým.
Introduction: Patient satisfaction with a pain management is a result of comparison of their expectations and perceived reality. It is influenced by many factors. The key factor is pain management, process that is aimed at eliminating pain. Aim: To present information from the available primary research dealing with satisfaction of adult hospitalized patients with a pain management of their acute postoperative pain. Methods: A literary search was performed - after setting the keywords, inclusion / exclusion criteria, time period and search question, two databases focused on nursing were searched. Relevant articles were chosen by titles, abstracts and then by full texts. Results: Four foreign studies were found. The results point to a significant relationships between patient satisfaction with a pain management and overall comfort, staff's attitude, empathy, awareness, waiting time for the analgesia and the length of time for pain relief to take effect. Conclusion: The four studies point out that many factors influence patient satisfaction with their pain management, and that the pain intensity may not be the key factor.
Goal: To seek and describe current scientific knowledge on the preparedness of medical personnel for an active shooter attack, with the identification of an optimal preparation strategy concerning prevention and potential management of this emergency on the premises of a medical facility. Methods: A scoping study with five phases of methodological steps was applied on the basis of the identified research question. According to the PCC (population, concept, context) format, the research question was divided into individual keywords in selected languages used for the search. Primary studies published between 2000 and December 2023 were included in the selection process. The sources were searched in December 2023 and freely available. Licensed databases EBSCOhost, Cinahl Plus with Full text, Medline, Medline Complete, and Google were used to find relevant studies. We used the "find similar articles" function in many databases. Selected English language keywords were searched using Boolean operators and placeholders. Results: The final analysis included nine studies. As precautions, the authors recommended the development of guidelines and establishment of a system, not only at the national level, but also within individual facilities interconnected with the police, regular training of employees with practical simulation, orientation signs in buildings, communication links for quick information and, last but not least, knowledge of warning behaviour. Conclusion: Healthcare providers should be systematically prepared for an active shooter emergency.
- MeSH
- doškolování MeSH
- lidé MeSH
- masová střelba * MeSH
- metaanalýza jako téma MeSH
- zdravotnická zařízení MeSH
- Check Tag
- lidé MeSH
PURPOSE: The purpose of this study was to analyze pressure injury (PI) occurrence upon admission and at any time during the hospital course inpatients care facilities in the Czech Republic. Secondary aims were to evaluate demographic and clinical data of patients with PI and the impact of a PI on length of stay (LOS) in the hospital. DESIGN: Retrospective, cross-sectional analysis. SETTING AND SUBJECTS: The sample comprised data of hospitalized patients entered into the National Register of Hospitalized Patients (NRHOSP) database of the Czech Republic between 2007 and 2014 with a diagnosis L89 (pressure ulcer of unspecified site based on the International Classification of Diseases, Tenth Revision, ICD-10). Electronic records of 17,762,854 hospitalizations were reviewed. METHOD: Data from the NRHOSP from all acute and non-acute care hospitals in the Czech Republic were analyzed. Specifically, we analyzed patients admitted to acute and non-acute care facilities with a primary or secondary diagnosis of PI. RESULTS: The NRHOSP database included 17,762,854 cases, of which 46,224 cases (33,342 cases in acute care hospitals; 12,882 in non-acute care hospitals) had the L89 diagnosis (0.3%). The mean age of patients admitted with a PI was 73.8 ± 15.3 years (mean ± SD), and their average LOS was 33.2 ± 76.9 days. The mean LOS of patients hospitalized with L89 code as a primary diagnosis (n = 6877) was significantly longer compared to those patients for whom L89 code was a secondary diagnosis (25.8 vs 20.2 days, P < .001) in acute care facilities. In contrast, we found no difference in the mean LOS for patients hospitalized in non-acute care facility (58.7 days vs 65.1 days; P = .146) with ICD code L89. CONCLUSION: Pressure injuries were associated with significant LOS in both acute and non-acute care settings in the Czech Republic. Despite the valuable insights we obtained from the analysis of NRHOSP data, we advocate creation of a more valid and reliable electronic reporting system that enables policy makers to evaluate the quality and safety concerning PI and its impact on patients and the healthcare system.
- MeSH
- databáze faktografické normy statistika a číselné údaje MeSH
- dekubity klasifikace epidemiologie ošetřování MeSH
- hospitalizovaní pacienti statistika a číselné údaje MeSH
- lidé středního věku MeSH
- lidé MeSH
- nemocnice normy statistika a číselné údaje MeSH
- neparametrická statistika MeSH
- průřezové studie MeSH
- retrospektivní studie MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- Check Tag
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Česká republika MeSH
BACKGROUND/OBJECTIVES: The aim of this project was to launch a new Food Composition Database (FCDB) Programme in the Czech Republic; to implement a methodology for food description and value documentation according to the standards designed by the European Food Information Resource (EuroFIR) Network of Excellence; and to start the compilation of a pilot FCDB. SUBJECTS/METHODS: Foods for the initial data set were selected from the list of foods included in the Czech Food Consumption Basket. Selection of 24 priority components was based on the range of components used in former Czech tables. The priority list was extended with components for which original Czech analytical data or calculated data were available. Values that were input into the compiled database were documented according to the EuroFIR standards within the entities FOOD, COMPONENT, VALUE and REFERENCE using Excel sheets. Foods were described using the LanguaL Thesaurus. RESULTS: A template for documentation of data according to the EuroFIR standards was designed. The initial data set comprised documented data for 162 foods. Values were based on original Czech analytical data (available for traditional and fast foods, milk and milk products, wheat flour types), data derived from literature (for example, fruits, vegetables, nuts, legumes, eggs) and calculated data. CONCLUSIONS: The Czech FCDB programme has been successfully relaunched. Inclusion of the Czech data set into the EuroFIR eSearch facility confirmed compliance of the database format with the EuroFIR standards. Excel spreadsheets are applicable for full value documentation in the FCDB.
- MeSH
- analýza potravin normy MeSH
- databáze faktografické normy MeSH
- dokumentace MeSH
- Fabaceae MeSH
- mléko MeSH
- nutriční hodnota MeSH
- ořechy MeSH
- ovoce MeSH
- software MeSH
- vejce MeSH
- zelenina MeSH
- zvířata MeSH
- Check Tag
- zvířata MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- Geografické názvy
- Česká republika MeSH
The European Practice Database (EPD) project, developed by the Research Board (RB) of EDTNA/ERCA, intended to collect data on renal practice at centre level in different European countries. During the pilot phase of the project (2002-2003), Czech Republic, Italy (North East) and England (North) participated with two thirds of all their eligible dialysis centres. Comparative results presented in this paper focus on centre size and patient characteristics, peritoneal and haemodialysis techniques, transplantation, infection control and the employment of technicians, dietitians and social workers in dialysis centres. At centre level, EPD results will enable in-depth evaluation of personal practice. International comparison of the results will stimulate further research and the development of new guidelines.
- MeSH
- ambulantní zařízení normy statistika a číselné údaje MeSH
- databáze faktografické MeSH
- dialýza ledvin statistika a číselné údaje MeSH
- hemodialyzační jednotky nemocnice normy statistika a číselné údaje MeSH
- infekce spojené se zdravotní péčí epidemiologie prevence a kontrola MeSH
- lidé MeSH
- pilotní projekty MeSH
- průzkumy zdravotní péče MeSH
- seznamy čekatelů MeSH
- transplantace ledvin statistika a číselné údaje MeSH
- zajištění kvality zdravotní péče * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- multicentrická studie MeSH
- srovnávací studie MeSH
- Geografické názvy
- Anglie epidemiologie MeSH
- Česká republika MeSH
- Itálie MeSH
Background: Numbers of psychiatric beds (general, forensic, and residential) and prison populations have been considered to be indicators of institutionalisation of people with mental illnesses. The present study aimed to assess changes of those indicators across Central Eastern Europe and Central Asia (CEECA) over the last three decades to capture how care has developed during that historical period. Methods: We retrospectively obtained data on numbers of psychiatric beds and prison populations from 30 countries in CEECA between 1990 and 2019. We calculated the median of the percent changes between the first and last available data points for all CEECA and for groups of countries based on former political alliances and income levels. Findings: Primary national data were retrieved from 25 out of 30 countries. Data from international registries were used for the remaining five countries. For all of CEECA, the median decrease of the general psychiatric bed rates was 33•8% between 1990 and 2019. Median increases were observed for forensic psychiatric beds (24•7%), residential facility beds (12•0%), and for prison populations (36•0%). Greater reductions of rates of psychiatric beds were observed in countries with lower per capita income as well as in countries that were formerly part of the Soviet Union. Seventeen out of 30 countries showed inverse trends for general psychiatric beds and prison populations over time, indicating a possible shift of institutionalisation towards correctional settings. Interpretation: Most countries had decreased rates of general psychiatric beds, while there was an increase of forensic capacities. There was an increase in incarceration rates in a majority of countries. The large variation of changes underlines the need for policies that are informed by data and by comparisons across countries. Funding: Agencia Nacional de Investigación y Desarrollo in Chile, grant scheme FONDECYT Regular, grant number 1190613.
- Publikační typ
- časopisecké články MeSH
- MeSH
- lázně ekonomika klasifikace statistika a číselné údaje MeSH
- odborné revizní organizace klasifikace organizace a řízení zákonodárství a právo MeSH
- pojišťovny klasifikace statistika a číselné údaje trendy MeSH
- systémy řízení databází organizace a řízení přístrojové vybavení statistika a číselné údaje MeSH
- ústavní řízení a kontrola ekonomika organizace a řízení statistika a číselné údaje MeSH
- všeobecné zdravotní pojištění ekonomika organizace a řízení statistika a číselné údaje MeSH
- zajištění kvality zdravotní péče organizace a řízení statistika a číselné údaje trendy MeSH
