Analysis of Factors Associated with Patient or Caregiver Regret following Surgery for Fecal Incontinence.

PURPOSE: Malone antegrade continence enema has been a successful and widely used procedure for achieving fecal continence in children. We present data on the previously uninvestigated issue of patient and caregiver regret following surgery for intractable constipation and fecal incontinence. MATERIALS AND METHODS: We reviewed all patients undergoing antegrade continence enema or cecostomy creation at a single institution between 2006 and 2016. Patients and caregivers were assessed for decisional regret using the Decisional Regret Scale. Results were correlated with demographics, surgical outcomes and complications. RESULTS: A total of 81 responses (49 caregivers and 32 patients) were obtained. Mean followup was 49 months. Decisional regret was noted in 43 subjects (53%), including mild regret in 38 (47%) and moderate to severe regret in 5 (6%). No statistical difference in regret was noted based on gender, complications or performance of concomitant procedures. On regression analysis incontinence was strongly associated with decisional regret (OR 4.4, 95% CI 1.1-18.1, p <0.001) and regret increased as age at surgery increased, particularly when patients were operated on at age 13 to 15 years (OR 2.6, 95% CI 1.0-6.4 for age 13 years; OR 2.9, 95% CI 1.1-7.8 for age 14 years; OR 3.1, 95% CI 1.1-8.8 for age 15 years). CONCLUSIONS: This is the first known study describing decisional regret following surgery for fecal incontinence. Surgical factors aimed at achieving continence may be effective in decreasing postoperative regret. The finding of increased regret in teenage patients compared to younger children should be shared with families since it may impact the age at which surgery is pursued.

A model of delivering multi-disciplinary care to people with 46 XY DSD.

In 2006, a consensus statement was jointly produced by the Lawson Wilkins Pediatric Endocrine Society (LWPES) and the European Society of Paediatric Endocrinology (ESPE) concerning the management of disorders of sex development (DSD) [1]. A recommendation provided by this consensus was that evaluation and long-term care for people affected by DSD should be performed at medical centers with multi-disciplinary teams experienced in such conditions. Here we provide our team's interpretation of the 2006 consensus statement recommendations and its translation into a clinical protocol for individuals affected by 46 XY DSD with either female, or ambiguous, genitalia at birth. Options for medical and surgical management, transitioning of care, and the use of mental health services and peer support groups are discussed. Finally, we provide preliminary data to support the application of our model for delivering multi-disciplinary care and support to patients and their families.

Endoscopic injection of submucosal bulking agents for the management of incontinent catheterizable channels.

BACKGROUND: Urinary and fecal continence can be achieved by constructing catheterizable continent channels that provide access to the bladder and bowel. Some patients develop persistent stomal leakage. A minimally invasive method of injection with a bulking agent for treatment of stomal incontinence was evaluated. METHODS: A retrospective review identified patients with incontinence of their catheterizable continent urinary channel (CUC) and/or antegrade continence enema (ACE). All patients underwent circumferential endoscopic sub-mucosal injection of the channel with a bulking agent, performed at the level of the continence mechanism. The type of injected material, number of procedures required, and success rates were evaluated. RESULTS: Out of 157 patients with a CUC and/or ACE (total of 164 stomas), eight patients underwent the minimally invasive therapy (total of nine stomas). The initial reconstructive procedure was appendicovesicostomy in one patient, ileovesicostomy (Monti) in seven patients, and ACE in two patients. Amount of bulking agent injected varied from 1.4 to 7 cc (mean 3.72 cc). Follow up ranged from 1 to 39 months (median 15 months). Two patients received multiple injections. One patient had injection of both a CUC and ACE. At the time of final follow up, 6/7 (86%) patients with a CUC and 1/2 (50%) with an ACE were continent per catheterizable channel. CONCLUSION: Injection of a bulking agent provides an excellent minimally invasive treatment alternative for incontinence of a catheterizable channel.