Dataset Information

No consensus on definition criteria for stroke registry common data elements.

ABSTRACT:

Background

Stroke registries contribute to the conduct of clinical research and to the assessment of health care quality control. Efforts to compare clinical outcomes and quality indicators between centers are dependent on standardized data elements, but it is unknown how stroke physicians define common data elements, such as hypertension or diabetes, when collecting data for registries at their centers.

Methods

We conducted an internet-based survey of 91 centers affiliated with a university to assess their definitions of common data elements (CDEs) and compared their responses with standardized definitions, including those from the American College of Cardiology (ACC).

Results

More than half (52%) of centers completed the survey. There was only modest agreement among respondents regarding definitions of CDEs in the survey and even less agreement on how the respondents' definitions compared to ACC standards.

Conclusions

Surveyed respondents do not agree on the definitions of CDEs, making comparisons between centers problematic. Standardized definitions of CDEs are needed to improve data collection for patient care and clinical research.

SUBMITTER: Albright KC

PROVIDER: S-EPMC3343760 | biostudies-literature | 2011 Jan-Dec

REPOSITORIES: biostudies-literature

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Publications

No consensus on definition criteria for stroke registry common data elements.

Albright Karen C KC Martin-Schild Sheryl S Bockholt H Jeremy HJ Howard George G Alexandrov Andrei A Alexandrov Anne A Sline M Rick MR Grotta James C JC Savitz Sean I SI

Cerebrovascular diseases extra 20110101 1

<h4>Background</h4>Stroke registries contribute to the conduct of clinical research and to the assessment of health care quality control. Efforts to compare clinical outcomes and quality indicators between centers are dependent on standardized data elements, but it is unknown how stroke physicians define common data elements, such as hypertension or diabetes, when collecting data for registries at their centers.<h4>Methods</h4>We conducted an internet-based survey of 91 centers affiliated with a ...[more]

PMID: 22566986

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Project description:IntroductionLoss of skeletal muscle mass and function (sarcopenia) is common in individuals with obesity due to metabolic changes associated with a sedentary lifestyle, adipose tissue derangements, comorbidities (acute and chronic diseases) and during the ageing process. Co-existence of excess adiposity and low muscle mass/function is referred to as sarcopenic obesity (SO), a condition increasingly recognized for its clinical and functional features that negatively influence important patient-centred outcomes. Effective prevention and treatment strategies for SO are urgently needed, but efforts are hampered by the lack of a universally established SO definition and diagnostic criteria. Resulting inconsistencies in the literature also negatively affect the ability to define prevalence as well as clinical relevance of SO for negative health outcomes.Aims and methodsThe European Society for Clinical Nutrition and Metabolism (ESPEN) and the European Association for the Study of Obesity (EASO) launched an initiative to reach expert consensus on a definition and diagnostic criteria for SO. The jointly appointed international expert panel proposes that SO is defined as the co-existence of excess adiposity and low muscle mass/function. The diagnosis of SO should be considered in at-risk individuals who screen positive for a co-occurring elevated body mass index or waist circumference, and markers of low skeletal muscle mass and function (risk factors, clinical symptoms, or validated questionnaires). Diagnostic procedures should initially include assessment of skeletal muscle function, followed by assessment of body composition where presence of excess adiposity and low skeletal muscle mass or related body compartments confirm the diagnosis of SO. Individuals with SO should be further stratified into stage I in the absence of clinical complications or stage II if cases are associated with complications linked to altered body composition or skeletal muscle dysfunction.ConclusionsESPEN and EASO, as well as the expert international panel, advocate that the proposed SO definition and diagnostic criteria be implemented into routine clinical practice. The panel also encourages prospective studies in addition to secondary analysis of existing data sets, to study the predictive value, treatment efficacy and clinical impact of this SO definition.

Project description:BackgroundMedical information management for stroke patients is currently a very time-consuming endeavor. There are clear guidelines and procedures to treat patients having acute stroke, but it is not known how well these established practices are reflected in patient documentation.ObjectiveThis study compares a variety of documentation processes regarding stroke. The main objective of this work is to provide an overview of the most commonly occurring medical concepts in stroke documentation and identify overlaps between different documentation contexts to allow for the definition of a core data set that could be used in potential data interfaces.MethodsMedical source documentation forms from different documentation contexts, including hospitals, clinical trials, registries, and international standards, regarding stroke treatment followed by rehabilitation were digitized in the operational data model. Each source data element was semantically annotated using the Unified Medical Language System. The concept codes were analyzed for semantic overlaps. A concept was considered common if it appeared in at least two documentation contexts. The resulting common concepts were extended with implementation details, including data types and permissible values based on frequent patterns of source data elements, using an established expert-based and semiautomatic approach.ResultsIn total, 3287 data elements were identified, and 1051 of these emerged as unique medical concepts. The 100 most frequent medical concepts cover 9.51% (100/1051) of all concept occurrences in stroke documentation, and the 50 most frequent concepts cover 4.75% (50/1051). A list of common data elements was implemented in different standardized machine-readable formats on a public metadata repository for interoperable reuse.ConclusionsStandardization of medical documentation is a prerequisite for data exchange as well as the transferability and reuse of data. In the long run, standardization would save time and money and extend the capabilities for which such data could be used. In the context of this work, a lack of standardization was observed regarding current information management. Free-form text fields and intricate questions complicate automated data access and transfer between institutions. This work also revealed the potential of a unified documentation process as a core data set of the 50 most frequent common data elements, accounting for 34% of the documentation in medical information management. Such a data set offers a starting point for standardized and interoperable data collection in routine care, quality management, and clinical research.

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Dataset Information

No consensus on definition criteria for stroke registry common data elements.

Background

Methods

Results

Conclusions

Publications

No consensus on definition criteria for stroke registry common data elements.

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