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

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

Acknowledgements

This work was supported by SpineCare Foundation who provided a scholarship for tertiary education in 2015 for Erin Garner to complete research into the development of a national pediatric spinal cord disorder database.

Disclosure statements

Contributors None.

Declaration of interest The author(s) has received benefits for personal or professional use from a commercial party related directly or indirectly to the subject of this manuscript. Erin Garner was awarded a one-year scholarship by the SpineCare Foundation in 2015 to complete research into the development of a national pediatric spinal cord disorder database.

Conflicts of interest Authors have no conflict of interests to declare.