Long-Term Decision Regret and Associated Factors Following Urinary Reconstruction in Underserved Patients with Spinal Cord Injury

Purpose: Patients with refractory neurogenic bladder dysfunction may require urinary reconstruction due to severe incontinence, difficulty with catheterization, and to prevent upper urinary tract compromise. We evaluated long-term decisional regret and associated factors following urinary reconstruction in spinal cord injury patients.

Materials and methods: We interviewed patients with spinal cord injuries who underwent bladder reconstruction surgery at least ten years ago, administering validated surveys on bowel quality of life and dysfunction, urinary tract infections, and decisional regret. Daily bladder management and symptoms were assessed using the Neurogenic Bladder Symptom Score (NBSS), a validated questionnaire consisting of three domains that examine incontinence, storage and voiding, and other health and quality of life consequences of neurogenic lower urinary tract dysfunction. Demographics, injury characteristics, and surgical modality were collected through chart reviews. Decisional regret was compared among subgroups and correlated with patient-reported outcomes.

Results: We evaluated 52 patients (41 men, 78.8%; mean age 54.9±10 years) with average follow-up of 30±8.6 years post-injury and 21.9±5.3 years post-surgery. Reconstruction procedures mostly included bladder augmentation (n=38, 73.1%) and augmentation with continent catheterizable stoma (n=9, 17.3%). The majority of patients were of Hispanic origin (n=41, 78.8%) with complete spinal cord injuries (n=39, 76%). The median decision regret score was 7.5 (interquartile range: 0-25), indicating low regret among most participants. Bladder irrigation frequency (p=0.002) was associated with decision regret, while other patient and surgical factors (e.g., demographics, urinary tract infection frequency, and surgery type) were not. Surgical regret was moderately correlated with diminished bowel-related quality of life (ρ=0.333, p=0.016) and increased NBSS score (ρ=0.328, p=0.018). The Incontinence (ρ=0.286, p=0.040) and Consequences (ρ=0.299, p=0.031) domains of this measure showed weak statistically significant correlations with regret, while the Storage and Voiding domain did not reach significance (ρ=0.245, p=0.080).

Conclusions: Long-term follow-up suggests that lower urinary tract reconstruction with bowel interposition is a well-accepted and durable approach for managing refractory neurogenic bladder. Factors associated with decision regret, such as need for irrigation, should be incorporated in patient-centered decision-making.