International Spinal Cord Injury Bowel Basic Data Set v.2.0
Managing bowel function can be a challenge for both the child and adult but also for the healthcare professional. Developing a common language and assessment tool can be useful to those who are reporting as well as the person documenting issues and progress.
Stepping in are two major spinal cord organizations, the American Spinal Injury Association (ASIA) and the International Spinal Cord Society (ISCoS). A guideline recording document was devised to assist in the organization of a method to discuss, report, as well as to follow progress of adults.
The International Spinal Cord Injury Bowel Function Basic Data Set (ISCIBFBDS) version 1 was developed in 2009 by the professionals at ASIA and ISCoS to collect the minimum amount of information about bowel function in clinical practice. The document can help to organize care as well as to be a continuous record that can be used between healthcare providers around town and around the world. As time and science progressed, the need for an updated document was recognized which is version 2 developed in 2017.
The first version of the document has been studied to assess validation in the pediatric population. Interrater reliability was ≥0.75. Some of the specific variables had less reliability. For now, the measurement can be used as an outline for children ages 3-4 who would be expected to be continent with some adaptions. Information should be obtained from the parent or guardian until age 11. At ages 12-15, both teen and parent should provide responses. Data from pediatric patients are not being collected for analysis at this point. A study of the International SCI Bowel Function Basic Data Set, version 2.0 has been undertaken to establish adaptations that need to be made for the pediatric population.
The International SCI Bowel Function Basic Data Set v.2
The second version of the International SCI Bowel Function Basic Data Set is pared down but also includes new information. The healthcare professional should ask about the listed items at each visit or on a schedule depending on the needs of the individual. As the current version does not have reliability ratings in the pediatric population, questions will need to be modified by the pediatric provider. This can provide consistency in your own practice but will not be translatable around the world at this point.
Data collected include information about issues that can affect bowel function such as health issues unrelated to SCI and surgical procedures, bowel evacuation, amount of time taken, frequency, issues at the time of the bowel program, digital stimulation, incontinence, fluctuance, containment device, oral medication, constipation, issues in the perianal region, abdominal discomfort. A score can be obtained for adults but not for pediatric individuals due to variabilities in physiology and reporting.
Choosing to use the International SCI Bowel Function Basic Data Set v.2.0 creates a common method of data collection that can be used to follow patient progress. Eventually, when the instrument is adapted for the pediatric population, benefits will also include interprofessional communication, data sent blindly can be compiled for research purposes to improve care for everyone. Permission is always required from the patient to allow their data to be submitted even though it is blinded. Check with your internal review or ethics committee to find the procedures at your organization or institution.
Written by Linda M. Schultz PhD, CRRN.
International Spinal Cord Injury Data Sets (both adult and some pediatric) are available for your review. These are located online at natureportfolio: https://www.nature.com/collections/gmhvnhhbxx.
References and Further Reading
Dent K, Zebracki K, Sadowsky C, Martin R, Behrman A, Lipa B, Biering-Sørensen F, Vogel LC, Mulcahey MJ. Evaluation of the International Spinal Cord Injury Bowel Function Basic Data Set Version 2.0 in Children and Youth with Spinal Cord Injury. Top Spinal Cord Inj Rehabil. 2022 Winter;28(1):21-33. doi: 10.46292/sci19-00001. Epub 2021 Oct 25. PMID: 35145332; PMCID: PMC8791417.
Krogh, K., Emmanuel, A., Perrouin-Verbe, B. et al. International Spinal Cord Injury Bowel Function Basic Data Set (Version 2.0). Spinal Cord 55, 692–698 (2017). https://doi.org/10.1038/sc.2016.189. (Descriptors of each item and a copy of the form are available within this manuscript.)
