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
Authors | Ellis, Jamie, Garner, Erin, Webster, Kate E., Darzins, Susan, Galea, Mary P. and Scheinberg, Adam |
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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. |
Keywords | pediatric spinal cord disorders; epidemiology; national register; minimum dataset |
Year | 2022 |
Journal | Journal of Spinal Cord Medicine |
Journal citation | pp. 1-9 |
Publisher | Taylor & Francis |
ISSN | 1079-0268 |
Digital Object Identifier (DOI) | https://doi.org/10.1080/10790268.2022.2115513 |
PubMed ID | 36066465 |
Scopus EID | 2-s2.0-85137746732 |
Page range | 1-9 |
Funder | SpineCare Foundation |
Publisher's version | License All rights reserved File Access Level Controlled |
Output status | In press |
Publication dates | |
Online | 06 Sep 2022 |
Publication process dates | |
Deposited | 26 Jul 2023 |
https://acuresearchbank.acu.edu.au/item/8z63z/establishing-an-australian-pediatric-spinal-cord-disorder-register-using-consumer-health-professional-and-researcher-perspectives
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