Long-term usage pattern and satisfaction survey of continent catheterizable channels

Introduction We investigated the long-term usage pattern and satisfaction of continent catheterizable channels (CCCs). Methods From 2005 to 2018, CCCs, including Mitrofanoff and antegrade continent enema (ACE) channels, were made in 67 patients (Mitrofanoff in 21 patients, ACE channels in 43 patients, and both in three patients) in our institution. An online survey was conducted for these patients in order to assess usage pattern, continent status, difficulty in usage, and patient satisfaction. Results Sixteen (66.7%) out of 24 patients with the Mitrofanoff channel and 39 (84.7%) out of 46 patients with the ACE channel completed the online survey. In the Mitrofanoff channel group, 10 (62.5%) patients had spina bifida, two (12.5%) had Hinman syndrome, one (6.3%) had posterior urethral valves, and three (18.8%) had urethral trauma or atresia. Additionally, the mean age of the patients at the time of surgery was 10.0 years, and the median follow-up duration was 10.9 years. All patients were using the Mitrofanoff channel to perform clean intermittent catheterization (CIC). Eleven patients (68.8%) had difficulty with catheterization, mostly at the stomal site. Most patients conducted CIC more than four times a day (13, 81.3%). Regarding urination status, seven patients (43.8%) responded that they were satisfied and nine (56.2%) responded they were neutral. In the ACE channel group, 35 patients (89.7%) had spina bifida, seven (17.9%) had cloacal anomalies, and 26 (66.7%) had anorectal malformations. The mean age of the patients at the time of surgery was 8.4 years, and the median follow-up period was 7.4 years. Two (5.1%) patients were no longer using their ACE channels, but 15 (38.5%) patients were still using their channels almost daily. Twenty-eight (71.8%) patients complained that performing enema was time-consuming, and seven (17.9%) patients reported pain when performing ACE and fecal incontinence. Most patients were satisfied with their defecation status (23, 59%), 15 (38.5%) were neutral, and one (2.6%) was dissatisfied. Conclusions While most patients who had either Mitrofanoff or ACE channels were still using their channels effectively, approximately half of the patients with CCCs demonstrated neutral satisfaction with their current status; this shows a poor result compared to previous reports. Considering the results of our patient-based study, thorough explanations should be provided to patients who are candidates for Mitrofanoff and ACE procedures; additionally, the discomfort related to the procedures should be comprehensively assessed during follow-up consults. [GRAPHICS] Summary Figure Usage pattern of the Mitrofanoff and anterograde continent enema channels and patients' satisfaction levels.