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302 Chapter 15 This information was entered into a patient registry using the REDCap© electronic data capture tool. 15 Successful response to SNS was defined as having >2 bowel movements and <1 episode of fecal incontinence per week at follow-up. Three members of our research team who were not directly involved in the clinical care of SNS patients contacted each patient's family by telephone in November 2015. We asked to speak to a parent or guardian of each patient. After a brief description of our study, we asked for verbal consent for participation in our study. If there was no answer, we left a voicemail message requesting a return call. We contacted each family up to three times. For those who agreed to participate, we administered the Glasgow Children's Benefit Inventory (GCBI), a measure of health-related patient benefit after an intervention. 16 The GCBI score ranges from−100 to +100, and positive scores indicate perceived benefit. We also asked two questions relating to satisfaction with the SNS treatment: (1) If you were able to go back in time to before your child started SNS treatment, would you still decide to proceed with SNS treatment? (2) Would you recommend SNS treatment to another family with a child who has the same symptoms as your child? Families were asked to explain their reason for each answer and responses were recorded by members of the research team. The Institutional Review Board approved our study protocol. Sacral nerve stimulation procedure Sacral nerve stimulation treatment was initiated in two stages for all patients. 10,17 Both stages were performed under general anesthesia with the patient in the prone position. The first stage procedure involved placement of a tined lead at the S3 sacral nerve root under fluoroscopic guidance. Placement was confirmed by observation of a bellows response of the pelvic floor and plantar flexion of the great toe with stimulation. The lead was then connected to a temporary pulse generator that remained external to the patient. Symptoms were monitored for a 2-week period. If clinical improvement in constipation was observed, the patient then underwent the second stage procedure, which involved implantation of a permanent pulse generator into the subcutaneous tissue of the buttock. The InterStim ® System (Medtronic, Inc., Minneapolis, MN, USA) was used for all patients. Sacral nerve stimulation procedures were performed either by a pediatric surgeon (ST) or a pediatric urologist (SAA). Patients generally returned for an initial follow-up appointment 2-4 weeks after the second stage procedure, followed by appointments at 3-month intervals through the first year after SNS initiation. Subsequent follow-up appointments generally occurred at 3-6 month intervals.

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