Revision and Expansion of the International Spinal Cord Injury Urinary Tract Infection Basic Data Set

International Spinal Cord Injury (SCI) Data Sets have been developed and disseminated worldwide since 2006 to establish minimum standards for clinical data collection. Basic data sets (BDSs) are intended to ensure a uniform minimum level of information across clinical settings and research projects. In 2013, an International SCI Urinary Tract Infection (UTI) Basic Data Set was published. This BDS defined UTI using the 1992 US National Institute on Disability and Rehabilitation Research criteria: "new onset of symptoms plus bacteriuria, leukocyturia, and positive urine culture." Since its publication, multiple new clinical and research definitions of UTI have emerged, creating the need for revision.

To update the International SCI UTI Basic Data Set to reflect contemporary consensus definitions and improve global consistency in clinical data collection.

A qualitative, 3-phase revision process was conducted. Phase 1 involved a phenomenographic surface analysis of the content of the International SCI UTI, Lower Urinary Tract (LUT) Function, Urodynamics, and Core Data Sets, alongside items from the validated, patient-centered Urinary Symptom Questionnaires for Neurogenic Bladder (USQNB), which are differentiated by bladder management method (voiding, intermittent catheterization, and indwelling catheter). Phase 2 consisted of a member check-in during which preliminary findings from the surface analysis were reviewed and refined with a subject matter expert. Phase 3 involved structured discussion and consensus refinement by an international panel of subject matter experts.

The revision process produced an updated set of criteria for determining the likelihood of UTI in individuals with SCI, aligned with a recent (2024) international consensus study. A revised UTI Basic Data Set (version 2) was developed that includes 22 new variables intended to enhance the consistency and comparability of global clinical data collection; only 10 to 12 additional variables are required per case depending on bladder management method.

The revised International SCI UTI Basic Data Set reflects contemporary consensus definitions and expands the scope of standardized variables, supporting more reliable and internationally harmonized clinical and research data collection for individuals with SCI.