routinely collected data
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BACKGROUND: International comparisons of population birth data provide essential benchmarks for evaluating perinatal health policies. OBJECTIVES: This study aimed to describe routine national data sources in Europe by their ability to provide core perinatal health indicators. METHODS: The Euro-Peristat Network collected routine national data on a recommended set of core indicators from 2015 to 2021 using a federated protocol based on a common data model with 16 data items. Data providers completed an online questionnaire to describe the sources used in each country. We classified countries by the number of data items they provided (all 16, 15-14, < 14). RESULTS: A total of 29 out of the 31 countries that provided data responded to the survey. Routine data sources included birth certificates (15 countries), electronic medical records (EMR) from delivery hospitalisations (16 countries), direct entry by health providers (9 countries), EMR from other care providers (7 countries) and Hospital Discharge Summaries (7 countries). Completeness of population coverage was at least 98%, with 17 countries reporting 100%. These databases most often included mothers giving birth in the national territory, regardless of nationality or place of residence (24 countries), whereas others register births to residents only. In 20 countries, routine sources were linked, including linkage between birth and death certificates (16 countries). Countries providing all 16 items (n = 8) were more likely to use EMRs from delivery hospitalisations (100%) compared to 50% and 11% in countries with 15-14 items (n = 12) and < 14 items (n = 9), respectively. Linkage was also more common in these countries (100%) versus 75% and 56%, respectively. Other data source characteristics did not differ by the ability to provide data on core perinatal indicators. CONCLUSIONS: There are wide differences between countries in the data sources used to construct perinatal health indicators in Europe. Countries using EMR linking to other sources had the best data availability.
- Klíčová slova
- Europe, birth data, international comparisons, perinatal indicators, pregnancy,
- MeSH
- elektronické zdravotní záznamy statistika a číselné údaje MeSH
- informační zdroje MeSH
- lidé MeSH
- novorozenec MeSH
- perinatální péče * statistika a číselné údaje normy MeSH
- rodné listy * MeSH
- rutinně sbírané zdravotní údaje * MeSH
- těhotenství MeSH
- Check Tag
- lidé MeSH
- novorozenec MeSH
- těhotenství MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- srovnávací studie MeSH
- Geografické názvy
- Evropa epidemiologie MeSH
BACKGROUND AND PURPOSE: The Registry of Stroke Care Quality (RES-Q) is a worldwide quality improvement data platform that captures performance and quality measures, enabling standardized comparisons of hospital care. The aim of this study was to determine if, and how, RES-Q data are used to influence stroke quality improvement and identify the support and educational needs of clinicians using RES-Q data to improve stroke care. METHODS: A cross-sectional self-administered online survey was administered (October 2021-February 2022). Participants were RES-Q hospital local coordinators responsible for stroke data collection. Descriptive statistics are presented. RESULTS: Surveys were sent to 1463 hospitals in 74 countries; responses were received from 358 hospitals in 55 countries (response rate 25%). RES-Q data were used "always" or "often" to: develop quality improvement initiatives (n = 213, 60%); track stroke care quality over time (n = 207, 58%); improve local practice (n = 191, 53%); and benchmark against evidence-based policies, procedures and/or guidelines to identify practice gaps (n = 179, 50%). Formal training in the use of RES-Q tools and data were the most frequent support needs identified by respondents (n = 165, 46%). Over half "strongly agreed" or "agreed" that to support clinical practice change, education is needed on: (i) using data to identify evidence-practice gaps (n = 259, 72%) and change clinical practice (n = 263, 74%), and (ii) quality improvement science and methods (n = 255, 71%). CONCLUSION: RES-Q data are used for monitoring stroke care performance. However, to facilitate their optimal use, effective quality improvement methods are needed. Educating staff in quality improvement science may develop competency and improve use of data in practice.
- Klíčová slova
- clinical quality registry, data, quality improvement, stroke,
- MeSH
- cévní mozková příhoda * terapie MeSH
- kvalita zdravotní péče MeSH
- lidé MeSH
- nemocnice MeSH
- průřezové studie MeSH
- registrace MeSH
- rutinně sbírané zdravotní údaje MeSH
- zlepšení kvality * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
We assessed the outcomes of pomalidomide and dexamethasone treatment in relapsed/refractory multiple myeloma (RRMM) patients with ≥1 prior line of therapy. We analyzed the data of all RRMM patients treated with pomalidomide and dexamethasone at nine Czech centers between 2013 and 2018. The source of the data was the Registry of Monoclonal Gammopathies of the Czech Republic. Primary endpoints included response rates based on International Myeloma Working Group criteria and survival measures, including progression-free survival (PFS) and overall survival (OS). Secondary endpoints were toxicities and previous treatment patterns, including refractory to lenalidomide, and their impact on final outcomes. The overall response rate was 51.8% and the clinical benefit rate (including patients with minimal response) was 67.1%, with 0.6% of complete responses, 8.5% of very good partial responses, and 42.1% of partial responses (PR). Overall, 16.5% of patients had a minimal response, and 32.3% had stable disease /progression. Median PFS was 8.8 months and the median OS was 14.2 months. In patients who achieved ≥PR, the median PFS and OS were significantly longer compared to non-responders (median PFS (12.1 vs. 4.5 months, p≤0.001 respectively), median OS (22.1 vs. 7.7 months, p≤0.001, respectively). The most frequent adverse events (AEs) were neutropenia (29.9%) and anemia (18.9%), non-hematological AEs included infections (14.6%) and fatigue (7.3%). Our analysis confirmed the effectiveness of pomalidomide and dexamethasone in a real-world setting. This therapy achieved reasonable outcomes comparable to the data from clinical trials even though this was an unbiased cohort of patients.
- MeSH
- dexamethason terapeutické užití MeSH
- lidé MeSH
- mnohočetný myelom * farmakoterapie MeSH
- protokoly protinádorové kombinované chemoterapie * terapeutické užití MeSH
- rutinně sbírané zdravotní údaje MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Česká republika epidemiologie MeSH
- Názvy látek
- dexamethason MeSH
- pomalidomide MeSH Prohlížeč
Despite the potential for patient-reported outcome measures (PROMs) and experience measures (PREMs) to enhance understanding of patient experiences and outcomes they have not, to date, been widely incorporated into renal registry datasets. This report summarizes the main points learned from an ERA-EDTA QUEST-funded consensus meeting on how to routinely collect PROMs and PREMs in renal registries in Europe. In preparation for the meeting, we surveyed all European renal registries to establish current or planned efforts to collect PROMs/PREMs. A systematic review of the literature was performed. Publications reporting barriers and/or facilitators to PROMs/PREMs collection by registries were identified and a narrative synthesis undertaken. A group of renal registry representatives, PROMs/PREMs experts and patient representatives then met to (i) share any experience renal registries in Europe have in this area; (ii) establish how patient-reported data might be collected by understanding how registries currently collect routine data and how patient-reported data is collected in other settings; (iii) harmonize the future collection of patient-reported data by renal registries in Europe by agreeing upon preferred instruments and (iv) to identify the barriers to routine collection of patient-reported data in renal registries in Europe. In total, 23 of the 45 European renal registries responded to the survey. Two reported experience in collecting PROMs and three stated that they were actively exploring ways to do so. The systematic review identified 157 potentially relevant articles of which 9 met the inclusion criteria and were analysed for barriers and facilitators to routine PROM/PREM collection. Thirteen themes were identified and mapped to a three-stage framework around establishing the need, setting up and maintaining the routine collection of PROMs/PREMs. At the consensus meeting some PROMs instruments were agreed for routine renal registry collection (the generic SF-12, the disease-specific KDQOL™-36 and EQ-5D-5L to be able to derive quality-adjusted life years), but further work was felt to be needed before recommending PREMs. Routinely collecting PROMs and PREMs in renal registries is important if we are to better understand what matters to patients but it is likely to be challenging; close international collaboration will be beneficial.
- Klíčová slova
- patient-reported measures, quality indicators, registry,
- MeSH
- elektronické zdravotní záznamy MeSH
- hodnocení výsledků pacienta * MeSH
- kvalita života MeSH
- kvalitativně upravené roky života MeSH
- lidé MeSH
- náhrada funkce ledvin * MeSH
- průzkumy a dotazníky MeSH
- registrace * MeSH
- renální insuficience terapie MeSH
- sběr dat * MeSH
- spokojenost pacientů MeSH
- ukazatele kvality zdravotní péče MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- konsensus - konference MeSH
- práce podpořená grantem MeSH
- systematický přehled MeSH
- Geografické názvy
- Evropa MeSH
Personalised medicine, new discoveries and studies on rare exposures or outcomes require large samples that are increasingly difficult for any single investigator to obtain. Collaborative work is limited by heterogeneities, both what is being collected and how it is defined. To develop a core set for data collection in rheumatoid arthritis (RA) research which (1) allows harmonisation of data collection in future observational studies, (2) acts as a common data model against which existing databases can be mapped and (3) serves as a template for standardised data collection in routine clinical practice to support generation of research-quality data. A multistep, international multistakeholder consensus process was carried out involving voting via online surveys and two face-to-face meetings. A core set of 21 items ('what to collect') and their instruments ('how to collect') was agreed: age, gender, disease duration, diagnosis of RA, body mass index, smoking, swollen/tender joints, patient/evaluator global, pain, quality of life, function, composite scores, acute phase reactants, serology, structural damage, treatment and comorbidities. The core set should facilitate collaborative research, allow for comparisons across studies and harmonise future data from clinical practice via electronic medical record systems.
- Klíčová slova
- outcomes research, quality indicators, rheumatoid arthritis,
- MeSH
- konsensus MeSH
- lidé MeSH
- pozorovací studie jako téma metody normy MeSH
- revmatoidní artritida * MeSH
- sběr dat metody normy MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- konsensus - konference MeSH
- práce podpořená grantem MeSH
OBJECTIVES: Real-world evidence is needed to inform treatment strategies for patients with PsA and axial SpA (axSpA) who have non-musculoskeletal manifestations (NMMs), various risk factors and comorbidities. International collaboration is required to ensure statistical power and to enhance generalizability. The first step forward is identifying which data are currently being collected. Across 17 registries participating in the European Spondyloarthritis Research Collaboration (EuroSpA), we aimed to map recording practices for NMMs, comorbidities and safety outcomes in patients with PsA and axSpA. METHODS: Through a survey with 4,420 questionnaire items, we explored the recording practices of 58 pre-defined conditions (i.e. NMMs, comorbidities and safety outcomes) covering 10 disease areas. In all registries we mapped for each condition whether it was recorded, the recording procedure and the potential to identify it through linkage to other national registries. RESULTS: Conditions were generally recorded at entry into the registry and clinical follow-up visits using a pre-specified list or a coding system. Most registries recorded conditions within the following disease areas: NMMs (number of registries, n = 15-16), cardiovascular diseases (n = 10-14), gastrointestinal diseases (n = 12-13), infections (n = 10-13) and death (n = 14). Nordic countries had the potential for data linkage and generally had limited recording of conditions in their registry, while other countries had comprehensive recording practices. CONCLUSION: A wide range of conditions were consistently recorded across the registries. The recording practices of many conditions and disease areas were comparable across the registries. Our findings support the potential for future collaborative research.
- Klíčová slova
- DMARDs, JAK inhibitors, biological therapies, comorbidity, multimorbidity, routinely collected data, spondyloarthritis,
- Publikační typ
- časopisecké články MeSH
Rubber dam is considered an ideal device for tooth isolation. Nevertheless, its usage is quite rare in the Czech Republic. The aim of this study was: firstly, to gather and evaluate information regarding the use of rubber dam by dentists in the Czech Republic and to compare it with other countries; secondly to find out whether there are any influencing factors as to rubber dam usage; and finally to find out frequency of rubber dam use separately in endodontic treatment and in placing fillings of different materials. A questionnaire-based survey was conducted. Dentists filled in the questionnaires during dental conventions, educational events, conferences and congresses. Rubber dam was routinely used by less than eight per cent of the respondents (n = 35); less than twenty-two per cent of the respondents (n = 97) used rubber dam occasionally, and more than seventy per cent of the respondents (n = 317) has never use it. The results showed that rubber dam is not used frequently in the Czech Republic. If rubber dam is used, then it is typically for endodontic treatment or composite fillings. There were several factors with a statistically significant influence on the usage of rubber dam, such as gender, length of professional career, percentage of direct payments, previous experience in using rubber dam, and undergraduate training in rubber dam use.
- MeSH
- gumové blány statistika a číselné údaje MeSH
- lidé MeSH
- sběr dat MeSH
- vzorové postupy ve stomatologii statistika a číselné údaje MeSH
- Check Tag
- lidé MeSH
- mužské pohlaví MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Česká republika MeSH
BACKGROUND: Cytological diagnostic of the lung cancer belongs to routine examinations. The aim of our study was to describe the development of the method in the Czech Republic during the last 20 years, and to evaluate the contribution of clinical cytologist and pathologists in this diagnostical method of the bronchogenic carcinoma. METHODS AND RESULTS: 61 stations of bronchology in the Czech Republic were requested (interrogatory method), evaluable responses were obtained from 58 stations (95.0%). Samples for micromorphological examination were send to laboratories of clinical cytology (20) or pathology (23). Samples from 15 stations are send to both departments. From the total of 91,477 of evaluated samples 64,404 were examined at departments of clinical cytology (70.4%) and 27,073 at departments of pathology (29.6%). Results from departments of clinical cytology arrive earlier (in average after 2.3 days) than from pathologies (4.9 days). Out of 4547 micro-morphologically proved lung carcinomas, 3913 (86%) were diagnosed at departments of clinical cytology and 634 (14%) at departments of pathology. CONCLUSIONS: At present, 70% of the micromorphological diagnostics is being done at laboratories of clinical cytology, 30% at departments of pathology. 86% of diagnoses of the bronchogenic cancer verified micro-morphologically come from laboratories of clinical cytology, 14% from departments of pathology.
- MeSH
- bronchogenní karcinom diagnóza patologie MeSH
- cytodiagnostika * MeSH
- lidé MeSH
- nádory plic diagnóza patologie MeSH
- sběr dat MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- anglický abstrakt MeSH
- časopisecké články MeSH
- Geografické názvy
- Česká republika MeSH
We provide a tutorial on differential item functioning (DIF) analysis, an analytic method useful for identifying potentially biased items in assessments. After explaining a number of methodological approaches, we test for gender bias in two scenarios that demonstrate why DIF analysis is crucial for developing assessments, particularly because simply comparing two groups' total scores can lead to incorrect conclusions about test fairness. First, a significant difference between groups on total scores can exist even when items are not biased, as we illustrate with data collected during the validation of the Homeostasis Concept Inventory. Second, item bias can exist even when the two groups have exactly the same distribution of total scores, as we illustrate with a simulated data set. We also present a brief overview of how DIF analysis has been used in the biology education literature to illustrate the way DIF items need to be reevaluated by content experts to determine whether they should be revised or removed from the assessment. Finally, we conclude by arguing that DIF analysis should be used routinely to evaluate items in developing conceptual assessments. These steps will ensure more equitable-and therefore more valid-scores from conceptual assessments.
- MeSH
- diagnostické sebehodnocení * MeSH
- interpretace statistických dat MeSH
- lidé MeSH
- průzkumy a dotazníky * MeSH
- psychometrie metody MeSH
- reprodukovatelnost výsledků MeSH
- senzitivita a specificita MeSH
- statistické modely * MeSH
- zkreslení výsledků (epidemiologie) * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
For the first time an anonymous survey by means of questionnaires on the scope and surgical treatment of strabism was used in the Czech Republic in 1998. In 54 departments of the Czech Republic 3167 operations of strabism were made. 80% of the operated patients were children under 15 years of age. The most frequent primary surgical operation was modification of the strength of horizontal muscles. This surgical procedure was implemented in 81.7%. The ratio of primary operations and re-operations in child patients was 10:1. The mean age of child patients during the primary operation of strabism was 4.3 years, on re-operation 7.2 years, the mean period of hospitalization during the primary operation was 4.4 days. Two surgical centres performed more than 20 operations per month. As a matter of routine a surgical microscope was used only by some departments which made less than 5 operations of children suffering from strabism per month. In order to follow up national trends of surgery of strabism the authors will repeat similar investigations in future.
- MeSH
- dítě MeSH
- lidé MeSH
- mladiství MeSH
- předškolní dítě MeSH
- reoperace MeSH
- sběr dat MeSH
- strabismus chirurgie MeSH
- Check Tag
- dítě MeSH
- lidé MeSH
- mladiství MeSH
- předškolní dítě MeSH
- Publikační typ
- anglický abstrakt MeSH
- časopisecké články MeSH
- Geografické názvy
- Česká republika MeSH