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
Permalink -

https://acuresearchbank.acu.edu.au/item/8z63z/establishing-an-australian-pediatric-spinal-cord-disorder-register-using-consumer-health-professional-and-researcher-perspectives

Restricted files

Publisher's version

  • 49
    total views
  • 0
    total downloads
  • 1
    views this month
  • 0
    downloads this month
These values are for the period from 19th October 2020, when this repository was created.

Export as

Related outputs

Worker experiences of the work health and safety impacts of exposure to dying and death in non-clinical settings : a qualitative scoping review
Roche, Natalie Clare, Darzins, Susan Wendy, Oakman, Jodi and Stuckey, Rwth. (2024). Worker experiences of the work health and safety impacts of exposure to dying and death in non-clinical settings : a qualitative scoping review. Mortality. pp. 1-26. https://doi.org/10.1080/13576275.2024.2315988
Testing feasibility of relevant outcome measures in an inpatient setting to demonstrate the value of occupational therapy
Tse, Tamara, Skorik, Stefani, Fraser, Ruby, Munro, Adrienne and Darzins, Susan Wendy. (2024). Testing feasibility of relevant outcome measures in an inpatient setting to demonstrate the value of occupational therapy. Australian Occupational Therapy Journal. 71(2), pp. 226-239. https://doi.org/10.1111/1440-1630.12920
Funeral industry workers’ work health and safety in Australia and Ireland
Roche, Natalie, Darzins, Susan and Stuckey, Rwth. (2022). Funeral industry workers’ work health and safety in Australia and Ireland. OMEGA - Journal of Death and Dying. pp. 1-22. https://doi.org/10.1177/00302228221075289
Worker experiences of the work health and safety impacts of exposure to dying and death in clinical settings : A qualitative scoping review
Roche, Natalie, Darzins, Susan, Oakman, Jodi and Stuckey, Rwth. (2022). Worker experiences of the work health and safety impacts of exposure to dying and death in clinical settings : A qualitative scoping review. OMEGA - Journal of Death and Dying. pp. 1-36. https://doi.org/10.1177/00302228221117902
Occupational therapy practice contexts
Joosten, Annette, Darzins, Susan, Pépin, Geneviève, Roche, Natalie, Cahill, Liana and Harrington, Rosamund. (2021). Occupational therapy practice contexts. In In Brown, Ted, Bourke-Taylor, Helen M., Isbel, Stephen, Cordier, Reinie and Gustafsson, Louise (Ed.). Occupational therapy in Australia : Professional and practice issues pp. 305-323 Routledge.
Survey of occupational therapy driver assessors’ rehabilitation interventions with older drivers
Unsworth, Carolyn Anne, Baker, Anne, Morton-Kehle, Dana and Darzins, Susan. (2021). Survey of occupational therapy driver assessors’ rehabilitation interventions with older drivers. Occupation Participation and Health. 42(2), pp. 116-126. https://doi.org/10.1177/15394492211050634
Linking occupational therapy models and assessments to the ICF to enable standardized documentation of functioning
Maritz, Roxanne, Baptiste, Sue, Darzins, Susan W., Magasi, Susan, Weleschuk, Chelsey and Prodinger, Birgit. (2018). Linking occupational therapy models and assessments to the ICF to enable standardized documentation of functioning. Canadian Journal of Occupational Therapy. 85(4), pp. 330 - 341. https://doi.org/10.1177/0008417418797146
Simulated versus traditional occupational therapy placements: A randomised controlled trial
Imms, Christine, Froude, Elspeth, Chu, Eli Mang Yee, Sheppard, Loretta, Darzins, Susan, Guinea, Steve, Gospodarevskaya, Elena, Carter, Rob, Symmons, Mark A., Penman, Merrolee, Nicola-Richmond, Kelli, Gilbert-Hunt, Susan, Gribble, Nigel, Ashby, Samantha and Mathieu, Erin. (2018). Simulated versus traditional occupational therapy placements: A randomised controlled trial. Australian Occupational Therapy Journal. 65(6), pp. 556 - 564. https://doi.org/10.1111/1440-1630.12513
Effectiveness and cost-effectiveness of embedded simulation in occupational therapy clinical practice education: study protocol for a randomised controlled trial
Imms, Christine, Chu, Eli Mang Yee, Guinea, Stephen, Sheppard, Loretta, Froude, Elspeth Heather, Carter, Rob, Darzins, Susan W., Ashby, Samantha, Gilbert-Hunt, Susan, Gribble, Nigel, Nicola-Richmond, Kelli, Penman, Merrolee, Gospodarevskaya, Elena, Mathieu, Erin and Symmons, Mark. (2017). Effectiveness and cost-effectiveness of embedded simulation in occupational therapy clinical practice education: study protocol for a randomised controlled trial. Trials. 18(345). https://doi.org/10.1186/s13063-017-2087-0
Measurement of activity limitations and participation restrictions: Examination of ICF-linked content and scale properties of the PC-part and FIM instruments
Darzins, Susan, Imms, Christine and Di Stefano, Marilyn. (2017). Measurement of activity limitations and participation restrictions: Examination of ICF-linked content and scale properties of the PC-part and FIM instruments. Disability and Rehabilitation. 39(10), pp. 1025 - 1038. https://doi.org/10.3109/09638288.2016.1172670
Bridging identity chasms: Occupational therapy academics' reflections on the journey towards scholarship
Fortune, Tracy, Ennals, Priscilla, Bhopti, Anoo, Neilson, Cheryl, Darzins, Susan and Bruce, Christopher. (2016). Bridging identity chasms: Occupational therapy academics' reflections on the journey towards scholarship. Teaching in Higher Education. 21(3), pp. 313 - 325. https://doi.org/10.1080/13562517.2016.1141289
Personal Care Participation Assessment and Resource Tool: Clinical utility for inpatient rehabilitation
Darzins, Susan W., Imms, Christine, Di Stefano, Marilyn and Radia-George, Camilla A.. (2016). Personal Care Participation Assessment and Resource Tool: Clinical utility for inpatient rehabilitation. Canadian Journal of Occupational Therapy. 83(4), pp. 237 - 248. https://doi.org/10.1177/0008417416648446
Responsiveness, construct and criterion validity of the Personal Care-Participation Assessment and Resource Tool (PC-PART)
Darzins, Susan W., Imms, Christine, Shields, Nora and Taylor, Nicholas F.. (2015). Responsiveness, construct and criterion validity of the Personal Care-Participation Assessment and Resource Tool (PC-PART). Health and Quality of Life Outcomes. 13(125), pp. 1-17. https://doi.org/10.1186/s12955-015-0322-5
The international classification of functioning, disability and health (ICF): revisting its relevancy for occupational therapy
Prodinger, Birgit, Darzins,, Susan, Magasi, Susan and Baptiste, Susan. (2015). The international classification of functioning, disability and health (ICF): revisting its relevancy for occupational therapy. World Federation of Ocupational Therapists Bulletin. 71(2), pp. 108 - 114. https://doi.org/10.1179/2056607715Y.0000000003
Validity and clinical utility of the Personal Care - Participation Assessment and Resource Tool (PC-PART)
Darzins, Susan. (2015). Validity and clinical utility of the Personal Care - Participation Assessment and Resource Tool (PC-PART) [Thesis]. https://doi.org/10.4226/66/5a9cbb58b0b8f
Evaluation of the internal construct validity of the Personal Care Participation Assessment and Resource Tool (PC-PART) using Rasch analysis
Darzins, Susan W., Imms, Christine, Di Stefano, Marilyn, Taylor, Nicholas and Pallant, Julie. (2014). Evaluation of the internal construct validity of the Personal Care Participation Assessment and Resource Tool (PC-PART) using Rasch analysis. BMC Health Services Research. 14(543), pp. 1 - 14. https://doi.org/10.1186/s12913-014-0543-z
Measurement properties of the Personal Care Participation Assessment and Resource Tool: A systematic review
Darzins, Susan W., Imms, Christine and Di Stefano, Marilyn. (2013). Measurement properties of the Personal Care Participation Assessment and Resource Tool: A systematic review. Disability and Rehabilitation. 35(4), pp. 265 - 281. https://doi.org/10.3109/09638288.2012.690819
A Systematic Review of the Measurement Properties of the Personal Care Participation, Assessment and Resource Tool (PC-Part)
Darzins, Susan, Imms, Christine and Di Stefano, Marilyn. (2011). A Systematic Review of the Measurement Properties of the Personal Care Participation, Assessment and Resource Tool (PC-Part). Australian Occupational Therapy Journal. 58(Suppl s1), pp. 127 - 128. https://doi.org/10.3109/09638288.2012.690819