In-Depth Real-World Evidence: Assembling a Comprehensive Spinal Cord Injury or Disease Veteran Cohort to Advance Understanding of Neurogenic Lower Urinary Tract Dysfunction.

Guidelines recommend initial cystometrography in patients with supra-sacral spinal cord injuries. Contemporary data on cohort composition and related adherence to neurogenic bladder guidelines is limited.

To assess treads in cohort composition and the proportion of persons with spinal cord injury who were seen by a urologist and who underwent cystometrography.

We identified the cohort of veterans with supra-sacral spinal cord injury in whom neurogenic bladder guidelines may apply. Measures included whether the veteran was seen by a urologist and had a cystometrography procedure performed within 2 years of the first SCI/D clinic or hospital encounter. We also examined trends over 20+ year cohort composition and overall survival.

The cohort consisted of 49 347 veterans with a mean follow-up of 10.2 (SD 6.5) years. The number of new patients was more than 3000 in 2000 and has been approximately 1200 from 2020 to 2023. Prevalent patients peaked in 2019 at 25 812, followed by a decline. Eighty percent of veterans had at least one record of lower urinary tract symptoms within 1 year of their first SCI/D encounter, and more than 55% received medication for urinary conditions or urinary supplies. An urologist visit was reported for 14 408 (29%) veterans, and cystometrography (CMG) was performed in 15 512 (31%) veterans. Over 20+ years, from 2000 to 2023, the mean age of new patients increased by almost 9 years, as did the proportion of veterans with baseline comorbidities; for example, the proportion of veterans with diabetes increased from 17% in 2000 to more than 45% in 2022. Median survival was 13.3 (IQR: 6.4-22.4).

The characteristics of veterans with supra-sacral SCI/D have changed to older age and more comorbidities, and most veterans have recorded lower urinary tract symptoms early after the initial SCI/D encounter. Given the study's insights into changing patient demographics, the crucial role of CMG, and the low rates of specialized urological care, there is a pressing need for enhanced awareness, surveillance, and updated treatment strategies tailored for this unique patient population. This paper calls for a concerted effort to improve healthcare delivery for veterans with supra-sacral SCI/D, aiming for early diagnosis and treatment to optimize outcomes and quality of life.

The study does not require clinicaltrials. gov trial registration. The reason is that is we did not "prospectively assign people or a group of people to an intervention" (ICMJE, Section I.1). Supplemental materials for the fourth paper in this series includes a STROBE statement (STrengthening the Reporting of OBservational studies in Epidemiology; https://www.strobe-statement.org).

Neurourology and urodynamics. 2026 Mar 09 [Epub ahead of print]

John Hornberger, John Lavelle

Department of Veterans Affairs Palo Alto Health Care System, Urology Section, Palo Alto, California, USA.