V roce 2023 bylo v České republice hlášeno 447 nových případů (a recidiv) TBC všech forem a lokalizací. To představuje 17% meziroční nárůst. Ten je dominantně způsoben migrací válečných uprchlíků z Ukrajiny. Relativně nejvíc pacientů mělo bydliště v Hl. m. Praze, nejméně v Moravskoslezském kraji. 71 % TBC bylo bakteriologicky ověřeno. Ve věkové skupině 0–14 let bylo hlášeno 30 případů TBC. Podíl osob narozených mimo Českou republiku se zjištěnou TBC v Česku představoval 49 % z celkové notifikace. 31 pacientů mělo multirezistentní TBC. Do registru TBC bylo nahlášeno 15 ú0mrtí na TBC. S hlášenou incidencí TBC 4,2 na 100 000 obyvatel se Česká republika i nadále řadí k zemím s nejnižším výskytem TBC v Evropě.
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- MeSH
- Epidemiologic Measurements * MeSH
- Humans MeSH
- Routinely Collected Health Data MeSH
- Tuberculosis * epidemiology MeSH
- Check Tag
- Humans MeSH
- Geographicals
- Czech Republic MeSH
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- Data Anonymization * MeSH
- Confidentiality * MeSH
- Humans MeSH
- Routinely Collected Health Data MeSH
- Check Tag
- Humans MeSH
- Publication type
- Newspaper Article MeSH
- Interview MeSH
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- Virus Activation physiology MeSH
- Data Analysis MeSH
- Herpes Zoster * epidemiology drug therapy complications prevention & control MeSH
- Disease Notification * MeSH
- Humans MeSH
- Risk Factors MeSH
- Routinely Collected Health Data MeSH
- Vaccination MeSH
- Herpesvirus 3, Human pathogenicity MeSH
- Check Tag
- Humans MeSH
- Publication type
- Research Support, Non-U.S. Gov't MeSH
- Geographicals
- Czech Republic MeSH
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- Health Information Management * organization & administration legislation & jurisprudence MeSH
- Routinely Collected Health Data MeSH
- Publication type
- Newspaper Article MeSH
- Geographicals
- Czech Republic MeSH
- MeSH
- Electronic Health Records * organization & administration legislation & jurisprudence MeSH
- European Union * organization & administration MeSH
- Medical Informatics organization & administration legislation & jurisprudence MeSH
- Attitude MeSH
- Routinely Collected Health Data MeSH
- Publication type
- Newspaper Article 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.
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- Dexamethasone therapeutic use MeSH
- Humans MeSH
- Multiple Myeloma * drug therapy MeSH
- Antineoplastic Combined Chemotherapy Protocols * therapeutic use MeSH
- Routinely Collected Health Data MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Geographicals
- Czech Republic 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.
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.
- MeSH
- Electronic Health Records MeSH
- Patient Outcome Assessment * MeSH
- Quality of Life MeSH
- Quality-Adjusted Life Years MeSH
- Humans MeSH
- Renal Replacement Therapy * MeSH
- Surveys and Questionnaires MeSH
- Registries * MeSH
- Renal Insufficiency therapy MeSH
- Data Collection * MeSH
- Patient Satisfaction MeSH
- Quality Indicators, Health Care MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Consensus Development Conference MeSH
- Research Support, Non-U.S. Gov't MeSH
- Geographicals
- Europe MeSH
- MeSH
- Safety MeSH
- Etanercept * administration & dosage adverse effects MeSH
- Arthritis, Juvenile * drug therapy MeSH
- Humans MeSH
- Treatment Failure MeSH
- Drug-Related Side Effects and Adverse Reactions epidemiology MeSH
- Routinely Collected Health Data MeSH
- Treatment Outcome MeSH
- Check Tag
- Humans MeSH
- Publication type
- Clinical Study MeSH
- Geographicals
- Germany MeSH
- MeSH
- Child MeSH
- Vaccines, Combined administration & dosage MeSH
- Humans MeSH
- Meningococcal Vaccines administration & dosage MeSH
- Pneumococcal Vaccines administration & dosage MeSH
- Routinely Collected Health Data MeSH
- Measles-Mumps-Rubella Vaccine administration & dosage MeSH
- Diphtheria-Tetanus-acellular Pertussis Vaccines administration & dosage MeSH
- Vaccination statistics & numerical data MeSH
- Papillomavirus Vaccines administration & dosage MeSH
- Check Tag
- Child MeSH
- Humans MeSH
- Geographicals
- Czech Republic MeSH
