Minimum Data Set for a Poisoning Registry: A Systematic Review.
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ABSTRACT:
SUBMITTER: Sabahi A
PROVIDER: S-EPMC8457722 | biostudies-literature | 2021
REPOSITORIES: biostudies-literature
Publications
Minimum Data Set for a Poisoning Registry: A Systematic Review.
Sabahi Azam A Asadi Farkhondeh F Shadnia Shahin S Rabiei Reza R Hosseini Azamossadat A
Iranian journal of pharmaceutical research : IJPR 20210101 2
Poisoning, as a well-known medical condition, puts everyone at risk. As a data management tool, a registry plays an important role in monitoring the poisoned patients. Having a poisoning minimum data set is a major requirement for creating a poisoning registry. Therefore, the present systematic review was conducted in 2019 to identify the minimum data set for a poisoning registry. Searches were performed in four scientific databases, <i>i.e</i>., PubMed, Scopus, Web of Science, and Embase. The k ...[more]
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Project description:BackgroundThe minimum data set (MDS) is a collection of data elements to be grouped using a standard approach to allow the use of data for clinical and research purposes. Health data are typically voluminous, complex, and sometimes too ambiguous to generate indicators that can provide knowledge and information on health. This complexity extends further to the rare disease (RD) domain. MDSs are essential for health surveillance as they help provide services and generate recommended population indicators. There is a bottleneck in international literature that reveals a global problem with data collection, recording, and structuring in RD.ObjectiveThis study aimed to identify and analyze the MDSs used for RD in health care networks worldwide and compare them with World Health Organization (WHO) guidelines.MethodsThe population, concept, and context methodology proposed by the Joanna Briggs Institute was used to define the research question of this systematic review. A total of 4 databases were reviewed, and all the processes were reported using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) methodology. The data elements were analyzed, extracted, and organized into 10 categories according to WHO digital health guidelines. The quality assessment used the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) checklist.ResultsWe included 20 studies in our review, 70% (n=14) of which focused on a specific health domain and 30% (n=6) of which referred to RD in general. WHO recommends that health systems and networks use standard terminology to exchange data, information, knowledge, and intelligence in health. However, there was a lack of terminological standardization of the concepts in MDSs. Moreover, the selected studies did not follow the same standard structure for classifying the data from their MDSs. All studies presented MDSs with limitations or restrictions because they covered only a specific RD, or their scope of application was restricted to a specific context or geographic region. Data science methods and clinical experience were used to design, structure, and recommend a fundamental global MDS for RD patient records in health care networks.ConclusionsOur study highlights the difficulties in standardizing and categorizing findings from MDSs for RD because of the varying structures used in different studies. The fundamental RD MDS designed in this study comprehensively covers the data needs in the clinical and management sectors. These results can help public policy makers support other aspects of their policies. We highlight the potential of our results to help strategic decisions related to RD.Trial registrationPROSPERO CRD42021221593; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=221593.International registered report identifier (irrid)RR2-10.1016/j.procs.2021.12.034.
| S-EPMC10415943 | biostudies-literature
Project description:BackgroundThe Resident Assessment Instrument-Minimum Data Set (RAI-MDS) 2.0 is designed to collect the minimum amount of data to guide care planning and monitoring for residents in long-term care settings. These data have been used to compute indicators of care quality. Use of the quality indicators to inform quality improvement initiatives is contingent upon the validity and reliability of the indicators. The purpose of this review was to systematically examine published and grey research reports in order to assess the state of the science regarding the validity and reliability of the RAI-MDS 2.0 Quality Indicators (QIs).MethodsWe systematically reviewed the evidence for the validity and reliability of the RAI-MDS 2.0 QIs. A comprehensive literature search identified relevant original research published, in English, prior to December 2008. Fourteen articles and one report examining the validity and/or reliability of the RAI-MDS 2.0 QIs were included.ResultsThe studies fell into two broad categories, those that examined individual quality indicators and those that examined multiple indicators. All studies were conducted in the United States and included from one to a total of 209 facilities. The number of residents included in the studies ranged from 109 to 5758. One study conducted under research conditions examined 38 chronic care QIs, of which strong evidence for the validity of 12 of the QIs was found. In response to these findings, the 12 QIs were recommended for public reporting purposes. However, a number of observational studies (n = 13), conducted in "real world" conditions, have tested the validity and/or reliability of individual QIs, with mixed results. Ten QIs have been studied in this manner, including falls, depression, depression without treatment, urinary incontinence, urinary tract infections, weight loss, bedfast, restraint, pressure ulcer, and pain. These studies have revealed the potential for systematic bias in reporting, with under-reporting of some indicators and over-reporting of others.ConclusionEvidence for the reliability and validity of the RAI-MDS QIs remains inconclusive. The QIs provide a useful tool for quality monitoring and to inform quality improvement programs and initiatives. However, caution should be exercised when interpreting the QI results and other sources of evidence of the quality of care processes should be considered in conjunction with QI results.
| S-EPMC2914032 | biostudies-literature
Project description:BACKGROUND: over the last 25 years several national registries of CF have been set up. Such systems can be very useful in providing an integrated resource for improving patient care and conducting research on the disease. Minimum Data Set is a common set of data items that should be used to collect and report data in the registry. The principal aim of this research was to determine minimum data set for the CF registry in north-west of Iran. METHODS: data items collected by several selected registries of cystic fibrosis were studied and an initial set of data was selected by the researchers. A group of experts including epidemiologists, pediatricians, and CF specialists were asked to review the proposed data elements and score them based on their importance by using a nine-point Likert scale. The items scored as important or highly important by more than 50 % of the experts, were included in final list of minimum data set. Availability of data was evaluated through reviewing medical records of 144 patients hospitalized in Children Hospital located in Tabriz. RESULTS: overall six classes of data (46 items) were identified in the selected registry systems for cystic fibrosis: patient demographics, administrative data, survival status, diagnostic procedures, genetic and clinical manifestations, and therapeutics. Thirty two data elements from all six categories of data were approved by the experts as the minimum data set for cystic fibrosis registry system. Availability of data in administrative category and survival class was 100 percent. Collecting data on medications was feasible in 100% of the cases as well. In class of demographic data, accessibility of patient name, age, gender, place of birth, and date of birth was 100 percent. In group of diagnostic procedures, partial availability of data was found for sweat test and genetic test. No data was found on the antenatal screening, exercise tolerance test, and glucose tolerance test. CONCLUSION: this work can be considered as a first step toward establishing CF registry system in Iran. Minimum data set can be also useful in designing electronic registry or electronic patient records for those suffering from CF toward integration of their fragmented records across continuum of the health care system in order to improve quality of shared patient care.
| S-EPMC4384873 | biostudies-other
Project description:In this work, classic intensity formulae were united with an empirical spot-fading model in order to calculate the diameter of a spherical crystal that will scatter the required number of photons per spot at a desired resolution over the radiation-damage-limited lifetime. The influences of molecular weight, solvent content, Wilson B factor, X-ray wavelength and attenuation on scattering power and dose were all included. Taking the net photon count in a spot as the only source of noise, a complete data set with a signal-to-noise ratio of 2 at 2 A resolution was predicted to be attainable from a perfect lysozyme crystal sphere 1.2 microm in diameter and two different models of photoelectron escape reduced this to 0.5 or 0.34 microm. These represent 15-fold to 700-fold less scattering power than the smallest experimentally determined crystal size to date, but the gap was shown to be consistent with the background scattering level of the relevant experiment. These results suggest that reduction of background photons and diffraction spot size on the detector are the principal paths to improving crystallographic data quality beyond current limits.
| S-EPMC2852304 | biostudies-literature
Project description:AimsOptimal risk stratification with machine learning (ML) from myocardial perfusion imaging (MPI) includes both clinical and imaging data. While most imaging variables can be derived automatically, clinical variables require manual collection, which is time-consuming and prone to error. We determined the fewest manually input and imaging variables required to maintain the prognostic accuracy for major adverse cardiac events (MACE) in patients undergoing a single-photon emission computed tomography (SPECT) MPI.Methods and resultsThis study included 20 414 patients from the multicentre REFINE SPECT registry and 2984 from the University of Calgary for training and external testing of the ML models, respectively. ML models were trained using all variables (ML-All) and all image-derived variables (including age and sex, ML-Image). Next, ML models were sequentially trained by incrementally adding manually input and imaging variables to baseline ML models based on their importance ranking. The fewest variables were determined as the ML models (ML-Reduced, ML-Minimum, and ML-Image-Reduced) that achieved comparable prognostic performance to ML-All and ML-Image. Prognostic accuracy of the ML models was compared with visual diagnosis, stress total perfusion deficit (TPD), and traditional multivariable models using area under the receiver-operating characteristic curve (AUC). ML-Minimum (AUC 0.798) obtained comparable prognostic accuracy to ML-All (AUC 0.799, P = 0.19) by including 12 of 40 manually input variables and 11 of 58 imaging variables. ML-Reduced achieved comparable accuracy (AUC 0.796) with a reduced set of manually input variables and all imaging variables. In external validation, the ML models also obtained comparable or higher prognostic accuracy than traditional multivariable models.ConclusionReduced ML models, including a minimum set of manually collected or imaging variables, achieved slightly lower accuracy compared to a full ML model but outperformed standard interpretation methods and risk models. ML models with fewer collected variables may be more practical for clinical implementation.
| S-EPMC9302886 | biostudies-literature
Project description:BACKGROUND:Toxic alcohols have been implicated in accidental ingestions and intentional exposures. Recognition of toxic alcohol poisoning is challenging. The main treatment modalities include antidotes with alcohol dehydrogenase inhibitors and dialysis. Current guidelines exist for both methanol and ethylene glycol intoxication. However, treatment consensus related to other toxic alcohols is limited. Furthermore, uncertainties regarding thresholds for when to initiate antidotes and dialysis persist. As a consequence, variations exist in the interventions utilized for management of all toxic alcohol poisonings. To our knowledge, no prior systematic review of clinical outcomes of toxic alcohols exists. The objective of this study is to summarize existing evidence on short- and long-term outcomes of patients following toxic alcohol poisonings, including methanol, ethylene glycol, isopropanol, propylene glycol, and diethylene glycol. METHODS:A literature search in PubMed, MEDLINE, and EMBASE will be performed based on pre-determined criteria. There will be no restrictions on publication dates or languages. The search will be supplemented by manual scan of bibliographies of eligible studies and gray literature assessment. Observational studies and clinical trials will be included in this review. Once eligible studies have been selected based on pre-specified criteria, two investigators will extract relevant data independently and perform quality assessment per validated tools. A pooled analysis of mortality and short- and long-term secondary outcomes will be performed. Pre-specified subgroup analyses will be performed according to the type of toxic alcohol intoxication, mode of renal replacement therapy, and medical interventions received. A meta-analysis will be performed if three or more studies with similar populations, type of toxic alcohol poisoning, and outcome measures, as well as adequate quality, are identified. This review will be reported according to the recommendations of the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) Statement. DISCUSSION:This systematic review aims to synthesize current evidence in the short- and long-term outcomes of post-toxic alcohol poisoning. The results will enhance the understanding of patient morbidity and mortality after toxic alcohol poisoning, help inform uniform concrete management guideline development, identify gaps in the current state of knowledge, and provide evidence to help implement post-treatment follow-up. SYSTEMATIC REVIEW REGISTRATION:PROSPERO CRD42018101955.
| S-EPMC6309090 | biostudies-other
Project description:BackgroundTo improve care, planners require accurate information about nursing home (NH) residents and their healthcare use. We evaluated how accurately measures of resident user status and healthcare use were captured in the Minimum Data Set (MDS) versus administrative data.MethodsThis retrospective observational cohort study was conducted on all NH residents (N = 8832) from Winnipeg, Manitoba, Canada, between April 1, 2011 and March 31, 2013. Six study measures exist. NH user status (newly admitted NH residents, those who transferred from one NH to another, and those who died) was measured using both MDS and administrative data. Rates of in-patient hospitalizations, emergency department (ED) visits without subsequent hospitalization, and physician examinations were also measured in each data source. We calculated the sensitivity, specificity, positive and negative predictive values (PPV, NPV), and overall agreement (kappa, κ) of each measure as captured by MDS using administrative data as the reference source. Also for each measure, logistic regression tested if the level of disagreement between data systems was associated with resident age and sex plus NH owner-operator status.ResultsMDS accurately identified newly admitted residents (κ = 0.97), those who transferred between NHs (κ = 0.90), and those who died (κ = 0.95). Measures of healthcare use were captured less accurately by MDS, with high levels of both under-reporting and false positives (e.g., for in-patient hospitalizations sensitivity = 0.58, PPV = 0.45), and moderate overall agreement levels (e.g., κ = 0.39 for ED visits). Disagreement was sometimes greater for younger males, and for residents living in for-profit NHs.ConclusionsMDS can be used as a stand-alone tool to accurately capture basic measures of NH use (admission, transfer, and death), and by proxy NH length of stay. As compared to administrative data, MDS does not accurately capture NH resident healthcare use. Research investigating these and other healthcare transitions by NH residents requires a combination of the MDS and administrative data systems.
| S-EPMC5896092 | biostudies-literature
Project description:Despite significant improvement in survival, rheumatic diseases (RD) are associated with premature mortality rates comparable to cardiovascular and neoplastic disorders. The aim of our study was to assess mortality, causes of death, and life expectancy in an inflammatory RD retrospective cohort and compare those with the general population as well as with the results of previously published studies in a systematic literature review. Patients with the first-time diagnosis of inflammatory RD during 2012-2019 were identified and cross-checked for their vital status and the date of death. Sex- and age-standardized mortality ratios (SMR) as well as life expectancy for patients with inflammatory RDs were calculated. The results of a systematic literature review were included in meta-standardized mortality ratio calculations. 11,636 patients with newly diagnosed RD were identified. During a total of 43,064.34 person-years of follow-up, 950 death cases occurred. The prevailing causes of death for the total cohort were cardiovascular diseases and neoplasms. The age- and sex-adjusted SMR for the total cohort was calculated to be 1.32 (1.23; 1.40). Patients with rheumatoid arthritis if diagnosed at age 18-19 tend to live for 1.63 years less than the general population, patients with spondyloarthritis-for 2.7 years less, patients with connective tissue diseases-for almost nine years less than the general population. The findings of our study support the hypothesis that patients with RD have a higher risk of mortality and lower life expectancy than the general population.
| S-EPMC8656671 | biostudies-literature
Project description:BackgroundCare homes provide long term care for older people. Countries with standardised approaches to residents' assessment, care planning and review (known as minimum data sets (MDS)) use the aggregate data to guide resource allocation, monitor quality, and for research. Less is known about how an MDS affects how staff assess, provide and review residents' everyday care. The review aimed to develop a theory-driven understanding of how care home staff can effectively implement and use MDS to plan and deliver care for residents.MethodsThe realist review was organised according to RAMESES (Realist And Meta-narrative Evidence Synthesis: and Evolving Standards) guidelines. There were three overlapping stages: 1) defining the scope of the review and theory development on the use of minimum data set 2) testing and refining candidate programme theories through iterative literature searches and stakeholders' consultations as well as discussion among the research team; and 3) data synthesis from stages 1 and 2. The following databases were used MEDLINE via OVID, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), ASSIA [Applied Social Sciences Citation Index and Abstracts]) and sources of grey literature.ResultsFifty-one papers informed the development of three key interlinked theoretical propositions: motivation (mandates and incentives for Minimum Data Set completion); frontline staff monitoring (when Minimum Data Set completion is built into the working practices of the care home); and embedded recording systems (Minimum Data Set recording system is integral to collecting residents' data). By valuing the contributions of staff and building on existing ways of working, the uptake and use of an MDS could enable all staff to learn with and from each other about what is important for residents' care CONCLUSIONS: Minimum Data Sets provides commissioners service providers and researchers with standardised information useful for commissioning planning and analysis. For it to be equally useful for care home staff it requires key activities that address the staff experiences of care, their work with others and the use of digital technology.RegistrationPROSPERO registration number CRD42020171323.
| S-EPMC8739629 | biostudies-literature
Project description:BackgroundSince September 2005 the International Committee of Medical Journal Editors has required that trials be registered in accordance with the World Health Organization (WHO) minimum dataset, in order to be considered for publication. The objective is to evaluate registries' and individual trial records' compliance with the 2006 version of the WHO minimum data set.MethodsA retrospective evaluation of 21 online clinical trial registries (international, national, specialty, pharmaceutical industry and local) from April 2005 to February 2007 and a cross-sectional evaluation of a stratified random sample of 610 trial records from the 21 registries.ResultsAmong 11 registries that provided guidelines for registration, the median compliance with the WHO criteria were 14 out of 20 items (range 6 to 20). In the period April 2005-February 2007, six registries increased their compliance by six data items, on average. None of the local registry websites published guidelines on the trial data items required for registration. Slightly more than half (330/610; 54.1%, 95% CI 50.1% - 58.1%) of trial records completed the contact details criteria while 29.7% (181/610, 95% CI 26.1% - 33.5%) completed the key clinical and methodological data fields.ConclusionWhile the launch of the WHO minimum data set seemed to positively influence registries with better standardisation of approaches, individual registry entries are largely incomplete. Initiatives to ensure quality assurance of registries and trial data should be encouraged. Peer reviewers and editors should scrutinise clinical trial registration records to ensure consistency with WHO's core content requirements when considering trial-related publications.
| S-EPMC2734552 | biostudies-literature