Establishing an Australian pediatric spinal cord disorder register using consumer, health professional, and researcher perspectives

Journal article


Ellis, Jamie, Garner, Erin, Webster, Kate E., Darzins, Susan, Galea, Mary P. and Scheinberg, Adam. (2022). Establishing an Australian pediatric spinal cord disorder register using consumer, health professional, and researcher perspectives. Journal of Spinal Cord Medicine. pp. 1-9. https://doi.org/10.1080/10790268.2022.2115513
AuthorsEllis, Jamie, Garner, Erin, Webster, Kate E., Darzins, Susan, Galea, Mary P. and Scheinberg, Adam
Abstract

Context/Objective: Pediatric spinal cord disorders (SCD) are rare, and epidemiological data available to support treatment are lacking. The implementation of a national data register tailored to this population would greatly assist clinicians and therapists in guiding clinical practice. This study gathered perspectives surrounding a prospective national pediatric spinal cord disorder register.

Design: Survey and modified Delphi technique.

Setting: Australia.

Participants: SCD consumers, health professionals, and researchers.

Interventions: None.

Outcome Measures: None.

Results: Purposive sampling recruited 6 consumers and 52 health professionals and researchers working in the field of SCD to participate. The consumer survey contained items including demographic information, general and pediatric-specific SCD health issues, and questions regarding activity and participation. The modified Delphi survey required health professionals and researchers to identify which “collection items” and “administrative features” should be included in a national SCD register for both clinical and research purposes. Seventeen essential and nine optional items, two outcome measures, data collection methods, consumer access, definition of “pediatric,” and use of International Data Standards were included in the consensus for a minimum dataset.

Conclusion: This study developed a minimum dataset that could inform an Australian register for pediatric SCD. A register linking to an adult database is recommended to ensure coverage across the lifespan. While items for a minimum dataset have been recommended, this dataset is large. Review and refinement of this list are recommended to ensure the register is not overly time-consuming for practical use.

Keywordspediatric spinal cord disorders; epidemiology; national register; minimum dataset
Year2022
JournalJournal of Spinal Cord Medicine
Journal citationpp. 1-9
PublisherTaylor & Francis
ISSN1079-0268
Digital Object Identifier (DOI)https://doi.org/10.1080/10790268.2022.2115513
PubMed ID36066465
Scopus EID2-s2.0-85137746732
Page range1-9
FunderSpineCare Foundation
Publisher's version
License
All rights reserved
File Access Level
Controlled
Output statusIn press
Publication dates
Online06 Sep 2022
Publication process dates
Deposited26 Jul 2023
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