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Evaluation of the International Spinal Cord Injury Bowel Function Basic Data Set Version 2.0 in Children and Youth
Kathryn Dent1, Kathy Zebracki2, Cristina Sadowsky3,4
1Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania.
Insights
The International Spinal Cord Injury/Dysfunction (SCI/D) Bowel Function Basic Data Set V2.0 is a feasible tool for pediatric SCI populations, showing good reliability for most bowel function variables. Further research is recommended to confirm these findings in diverse groups.
Area of Science:
- Pediatric Rehabilitation Medicine
- Neuroscience
- Clinical Data Set Development
Background:
- Pediatric spinal cord injury (SCI) presents unique challenges in bowel management.
- Standardized data collection is crucial for improving care and research in pediatric SCI.
- The International SCI/D Bowel Function Basic Data Set V2.0 aims to standardize bowel function assessment.
Purpose of the Study:
- To evaluate the utility and feasibility of the International SCI/D Bowel Function Basic Data Set V2.0 in children and adolescents with SCI.
- To assess the reliability and agreement of the data set with existing medical records in a pediatric SCI population.
Main Methods:
- A noninterventional, repeated measure design was employed across multiple US states.
- The International SCI/D Bowel Function Basic Data Set V2.0 was administered twice in-person and once via phone.
- Inter- and intrarater reliability were analyzed using intraclass correlation coefficients (ICC), and agreement with medical records was calculated.
Main Results:
- Forty-one pediatric participants (ages 1-20) completed the study, with an average data set completion time of 5.17 minutes.
- Most variables demonstrated good to excellent interrater reliability (ICC ≥ 0.75).
- Intrarater reliability was generally good to strong (ICC = 0.88-1.00), with minor exceptions. Medical record documentation for data set variables was limited (32%).
Conclusions:
- The International SCI/D Bowel Function Basic Data Set V2.0 is a feasible and reliable tool for assessing bowel function in pediatric SCI.
- Findings support the use of this data set in clinical practice and future research.
- Further validation with larger, diverse pediatric SCI samples is warranted to strengthen psychometric evidence.
Objectives:
To establish the utility and feasibility of the International Spinal Cord Injury/Dysfunction (SCI/D) Bowel Function Basic Data Set Version 2.0 in pediatric SCI populations.
Methods:
This was a noninterventional, repeated measure design conducted in Pennsylvania, Maryland, Illinois, Kentucky, and South Carolina. The International Spinal Cord Injury/Dysfunction (SCI/D) Bowel Function Basic Data Set Version 2.0 was administered repeatedly, twice at the point of care and once over the phone. Time to complete the data set was recorded. Inter- and intrarater reliability was examined by intraclass correlation coefficients (ICC) with 95% confidence intervals (CI), and agreement between the bowel function basic data set variables and medical records was calculated using percentages. Intrarater reliability involved the same person administering the data once at the point of care and once over the phone.
Results:
Forty-one children/youth ages 1 to 20 years participated in this study. Average time to complete the data set was 5.17 minutes. Interrater reliability was good to excellent (ICC ≥ 0.75) for most variables. Five variables had moderate interrater reliability (ICC = 0.05-0.74) and three had poor interrater reliability (ICC < 0.05). With the exception of one variable that had poor intrarater reliability (constipating agent, ICC = 0.00) and one that approached moderate reliability (digital evacuation, ICC = 0.74), intrarater reliability was good to strong for every bowel variable (ICC = 0.88-1.00). Only 12 (32%) medical records had explicit documentation of one or more of the variables on the Basic Bowel Function Basic Data Set V2.0.
Conclusion:
The results support future research with a larger and more diverse sample of children with SCI to build upon the psychometric work described herein.
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