Abstract
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.
Original language | English (US) |
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Pages (from-to) | 301-377 |
Number of pages | 77 |
Journal | Clinical Autonomic Research |
Volume | 33 |
Issue number | 3 |
DOIs | |
State | Published - Jun 2023 |
Bibliographical note
Funding Information:The authors would like to thank Robert Shaddy, MD, and Lawrence Barnes, MBA, who had the foresight [and the funding] to encourage the 2017 Children’s Hospital of Philadelphia-sponsored POTS Research Meeting that initiated this project, as well as several subsequent meetings. We would also like to acknowledge the extraordinary and inspiring patients and families for whom we have been so privileged to provide care, and from whom we have been so fortunate to learn.
Publisher Copyright:
© 2023, The Author(s), under exclusive licence to Springer-Verlag GmbH Germany.
Keywords
- Adolescent
- Autonomic nervous system
- Child
- Health information
- Medical informatics
PubMed: MeSH publication types
- Journal Article