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Relevance of the international spinal cord injury basic data sets to youth: an Inter-Professional review with
A Carroll1, L C Vogel2,3, K Zebracki3,4
1Department of Occupational Therapy, Jefferson College of Health Professions, Thomas Jefferson University, Philadelphia, PA, USA.
Insights
This study critically reviewed the International Spinal Cord Injury (SCI) Data Sets for pediatric use. Recommendations were made to improve the relevance and applicability of these essential SCI data sets for children.
Area of Science:
- Pediatric Rehabilitation
- Spinal Cord Injury Research
- Clinical Data Standards
Background:
- The International Spinal Cord Injury (SCI) Core and Basic Data Sets are crucial for consistent data collection.
- Adapting these data sets for pediatric populations is essential for accurate research and clinical practice.
- Previous evaluations of data set applicability in pediatric SCI were limited.
Purpose of the Study:
- To evaluate the utility and relevance of the International SCI Core and Basic Data Sets for children and youth with SCI.
- To propose modifications to enhance the applicability of SCI data sets for pediatric populations.
- To align pediatric SCI data collection with developing Common Data Elements (CDEs).
Main Methods:
- A mixed-methods approach combining the Modified Delphi Technique and Expert Panel Review.
- International collaboration involving 20 electronic surveys with interprofessional healthcare professionals experienced in pediatric SCI.
- Expert panel review and correlation with National Institute of Neurological Disorders and Stroke (NINDS) pediatric SCI Common Data Elements (CDEs).
Main Results:
- Two International SCI Data Sets were deemed appropriate for pediatric use without modification.
- Three data sets were found inappropriate or not applicable for children across all age groups.
- Recommendations were developed for five data sets to improve pediatric relevance and applicability, with seven sets having specific recommendations for infants and younger children.
Conclusions:
- Substantive recommendations were made to align the International SCI Core and Basic Data Sets with pediatric practice.
- The revised data sets are expected to improve the consistency and quality of data collection in pediatric SCI.
- This critical review provides a foundation for standardized data collection in pediatric spinal cord injury.
Study Design:
Mixed methods, using the Modified Delphi Technique and Expert Panel Review.
Objective:
To evaluate the utility and relevance of the International Spinal Cord Injury (SCI) Core and Basic Data Sets for children and youth with SCI.
Setting:
International.
Methods:
Via 20 electronic surveys, an interprofessional sample of healthcare professionals with pediatric SCI experience participated in an iterative critical review of the International SCI Data Sets, and submitted suggestions for modifications for use with four pediatric age groups. A panel of 5 experts scrutinized the utility of all data sets, correlated any modifications with the developing National Institute of Neurological Disorders and Stroke (NINDS) pediatric SCI Common Data Elements (CDE) and distributed final recommendations for modifications required to the adult data sets to the International SCI Data Set Committee and the associated Working Groups.
Results:
Two International SCI Data Sets were considered relevant and appropriate for use with children without any changes. Three were considered not appropriate or applicable for use with children, regardless of age. Recommendations were made for five data sets to enhance their relevance and applicability to children across the age groups, and recommendations for seven data sets were specific to infants and younger children.
Conclusions:
The results of this critical review are significant in that substantive recommendations to align the International SCI Core and Basic Data Sets to pediatric practice were made.
Sponsorship:
This project was funded by the Rick Hansen Institute Grant# 2015-27.
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