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Creating a data dictionary for pediatric autonomic disorders
Jeffrey R Boris1, Hasan Abdallah2, Shelley Ahrens3
1Jeffrey R. Boris, MD LLC, P.O. Box 16, Moylan, PA, 19065, USA. jeffreyborismd@earthlink.net.
Insights
A new data dictionary standardizes terms for pediatric autonomic disorders, improving clinical care and research. This resource ensures consistent language for evaluating and managing these complex conditions in children.
Area of Science:
- Pediatric Medicine
- Autonomic Neuroscience
- Medical Informatics
Background:
- A common language is crucial for clinical evaluation, research, and documentation in healthcare.
- Standardized terminology ensures clarity and consistency among healthcare professionals and stakeholders.
- The Pediatric Section of the American Autonomic Society identified a need for a dedicated resource.
Purpose of the Study:
- To develop a comprehensive data dictionary for pediatric autonomic disorders.
- To establish a standardized set of terms and definitions for evaluation and management.
- To create a foundational resource for clinical care and research in this field.
Main Methods:
- A list of terms was compiled by the research group.
- Definitions were sourced from established resources, consensus statements, and the internet.
- Definitions were modified or created as needed to ensure harmonization and completeness.
Main Results:
- A data dictionary containing 589 terms was successfully created.
- Terms were systematically organized into categories such as Signs/Symptoms, Triggers, and Diagnoses.
- The dictionary provides definitions for various aspects of pediatric autonomic disorder management.
Conclusions:
- The developed data dictionary serves as a foundational tool for future clinical care and research in pediatric autonomic disorders.
- This resource can be expanded to create a similar dictionary for adult autonomic disorders.
- Standardization of terminology is vital for advancing the understanding and treatment of these conditions.
Purpose:
Whether evaluating patients clinically, documenting care in the electronic health record, performing research, or communicating with administrative agencies, the use of a common set of terms and definitions is vital to ensure appropriate use of language. At a 2017 meeting of the Pediatric Section of the American Autonomic Society, it was determined that an autonomic data dictionary comprising aspects of evaluation and management of pediatric patients with autonomic disorders would be an important resource for multiple stakeholders.
Methods:
Our group created the list of terms for the dictionary. Definitions were prioritized to be obtained from established sources with which to harmonize. Some definitions needed mild modification from original sources. The next tier of sources included published consensus statements, followed by Internet sources. In the absence of appropriate sources, we created a definition.
Results:
A total of 589 terms were listed and defined in the dictionary. Terms were organized by Signs/Symptoms, Triggers, Co-morbid Disorders, Family History, Medications, Medical Devices, Physical Examination Findings, Testing, and Diagnoses.
Conclusion:
Creation of this data dictionary becomes the foundation of future clinical care and investigative research in pediatric autonomic disorders, and can be used as a building block for a subsequent adult autonomic data dictionary.
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