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. 2019 Oct 31:5:91.
doi: 10.1038/s41394-019-0230-8. eCollection 2019.

The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set

Miriam Hwang  1 , Marika Augutis  2 , Cristina Sadowsky  3 , Wiebke Höfers  4 , Lawrence C Vogel  1 , Marcel Post  5 , Susan Charlifue  6 , Peter Wayne New  7   8   9 , Rhona Fisher  10 , Joan Carney  3 , Kathryn Dent  11 , M J Mulcahey  11
Affiliations

The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set

Miriam Hwang et al. Spinal Cord Ser Cases. .

Abstract

Study design: International focus groups.

Objectives: The objective of this project was to develop the International Spinal Cord Injury (SCI) Pediatric Activity and Participation (A&P) Basic Data Set.

Methods: A focus group of experts in pediatric and adult SCI, and contributors of the existing adult International SCI Adult A&P Basic Data Set convened to develop an initial draft of the data set, which was iteratively refined over a 12 month period based on relevant literature and existing outcome measures that evaluate pediatric activity and participation. The draft was reviewed and approved by the larger project working group and then distributed to the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups for review. Feedback received was considered before the final data set was approved.

Results: The International SCI Pediatric A&P Basic Data Set is comprised of 13 variables: administration date, mobility, dressing, feeding, toileting, communication, family outings, spending time with friends, being out with friends, participating in team or club activity, paid work, dating, and physical activity. It is intended for children between 6 and 17 years of age, who have been discharged from initial rehabilitation/hospitalization for a minimum of 3 months.

Conclusion: The International SCI Pediatric A&P Basic Data Set was developed to standardize the recording of a minimal amount of information about activities and participation in children with SCI. Further work on reliability and cultural validation is needed.

Sponsorship: This study was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).

Keywords: Health care; Neurological disorders.

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Conflict of interest statement

Conflict of interestSC receives research support from the Craig H. Neilsen Foundation, the US Department of Defense Spinal Cord Injury Research Program and from the National Institute on Disability, Independent Living and Rehabilitation Research. MJM receives research support from the Shiners Hospitals for Children, National Institute Neurological Disease and Stroke, The Craig H. Neilsen Foundation and The Rick Hansen Institute. She receives compensation for her role as Associate Editor for Topics in Spinal Cord Rehabilitation, royalties for the text book “The Child and Young Adult with Spinal Cord Injury.” LCV receives compensation for his role as editor for topics in spinal cord rehabilitation, royalties for the text book “The Child and Young Adult with Spinal Cord Injury.” Dr Noonan is employed by Rick Hansen Institute, the funding source of this work. The remaining authors declare no conflict of interest.

References

    1. Biering-Sørensen F, Charlifue S, DeVivo M, Noonan V, Post M, Stripling T, et al. International spinal cord injury data sets. Spinal Cord. 2006;44:530–4. doi: 10.1038/sj.sc.3101930. - DOI - PubMed
    1. International SCI Data Sets. http://www.iscos.org.uk/international-sci-data-sets. Retrieved 5 Jan 2019.
    1. Biering-Sørensen F, Charlifue S, DeVivo MJ, Grinnon S, Kleitman N, Lu Y, et al. Using the spinal cord injury common data elements. Top Spinal Cord Inj Rehabil. 2012;18:23–7. doi: 10.1310/sci1801-23. - DOI - PMC - PubMed
    1. Biering-Sørensen F, Charlifue S, Devivo MJ, Grinnon ST, Kleitman N, Lu Y, et al. Incorporation of the International Spinal Cord Injury Data Set elements into the National Institute of Neurological Disorders and Stroke Common Data Elements. Spinal Cord. 2011;49:60–4. doi: 10.1038/sc.2010.90. - DOI - PMC - PubMed
    1. Carroll A, Vogel LC, Zebracki K, Noonan VK, Biering-Sorensen F, Mulcahey MJ. Relevance of the international spinal cord injury basic data sets to youth: an inter-professional review with recommendations. Spinal Cord. 2017;55:875–81. doi: 10.1038/sc.2017.14. - DOI - PubMed

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