Introduction: Catheterizable stomas have revolutionized the management of neurogenic bladder. Long-term follow up is required due to high complication rates. There is concern with long term usage of the stoma during the transition to adulthood period. The aim of the study was to evaluate long-term functional outcomes and degree of satisfaction in pediatric patients and their caregivers after undergoing Continent Catheterizable Channel (CCC) and/or Malone Antegrade Continence Enema (MACE) procedure. Methods: We retrospectively reviewed the charts of 32 pediatric patients who had undergone 53 CCC's between 2007 and 2022. Data was analyzed including indication, type of channel, and complications. Patients and caregivers were contacted via telephone and a survey assessing frequency of usage, presence of urinary/fecal incontinence, factors limiting or preventing channel use, and overall degree of satisfaction was conducted. This study was approved by our local IRB committee. Results: 81% (26) patients had a Mitrofanoff channel and 19% (6) a Monti channel. 21 patients also underwent a concomitant MACE procedure. The average age at surgery was 10.4 years, ranging from 5-19 years. The average length of follow up was 6.9 years, with 9 patients followed for more than 10 years. 10 patients underwent revision surgery, 8 due to channel stenosis (5 sub-fascial, 3 supra-fascial). 90% of patients reported the CCC is still in use. In 65% of cases, it is the patient performing CIC. 6 reported incontinence through the CCC, which was mild in all cases. In terms of satisfaction, 84% reported to be “very satisfied” with the procedure/outcomes. In terms of the MACE procedure, 89% reported to still be using the channel and 78% of patients reported complete fecal continence. 3 patients underwent MACE revision due to stenosis (15%). The main performer of ACE is the patient in over 60% of cases and it takes on average 30-40 minutes to perform. 95% of patients reported to be “very satisfied” with the procedure. Conclusions: Continent catheterizable stomas are feasible and reliable in long term follow up. Despite a high revision rate (33%) associated with CCC, our data shows that functional outcomes and patient/caregiver satisfaction remain high even after transition into early adulthood. SOURCE OF Funding: none
