Enhanced recovery program in ambulatory pediatric urology: A quality improvement initiative.

BACKGROUND: Enhanced Recovery After Surgery (ERAS) was established in 2001 for adult patients undergoing complex procedures. ERAS in adult ambulatory surgery later followed with similar positive outcomes. For the pediatric population, ERAS implementation has shown promising results in complex surgeries such as bladder reconstruction. Its application in pediatric ambulatory surgery has only recently been reported. We hereby report a Quality Improvement initiative in implementing an Enhanced Recovery Protocol (ERP) for pediatric urology in an ambulatory surgery center. METHODS: A project was launched to evaluate and implement enhanced recovery elements into an institutional Enhanced Recovery Protocol (ERP). These included reliance on peripheral nerve blocks for all inguinal and genital cases and reduction of opioids intraoperatively and postoperatively. Improvements were placed into a project plan broken into one preparation phase to collect baseline data and three implementation phases to enhance existing and implement new elements. The implementation phase went through iterative Plan-Do-Study-Act (PDSA) cycles for all sub-projects. Team countermeasures were based on available evidence. A consensus process was used to resolve disagreement. Monthly meetings were held to share real-time data, gather new feedback, and modify plans as needed. The primary outcome measures selected were percent intraoperative opioid use, percent opioid prescribing, mean PACU length of stay, and average number of opioid doses prescribed. Secondary outcome measures were mean maximum pain score in PACU, PACU rescue rate for PONV, and patient/family satisfaction scores. Post-implementation data for 18 months was included for evaluation. Statistical process control methodology was used. RESULTS: The total number of participants was 3306: 561 (baseline), 220 (Phase 1) 356 (Phase 2) and 527 (Phase 3), 1642 (post-implementation). Intraoperative opioid use was eliminated in >99% of cases. Post-operative opioid prescribing was reduced from 30% to 15% of patients. The number of opioid doses was also reduced from an average of 7.6 to 6.1 doses. There was no change for the mean maximum pain score in the recovery room despite elimination of opioids. Patient/family satisfaction scores were high and sustained throughout the period of study (9.8/10). Balancing measures such as return to the operating room within 30 days and return to the emergency department within 7 days were unchanged. CONCLUSIONS: This QI project demonstrated the feasibility of a pediatric enhanced recovery protocol in a urology ambulatory surgery setting. With implementation of this protocol, intraoperative opioid use was virtually eliminated, and opioid prescribing was reduced without affecting pain scores or post-operative complications.

A novel approach to bladder cycling for defunctionalized bladders prior to pediatric kidney transplantation: A case series.

Ensuring a safe reservoir for pediatric renal transplantation into a defunctionalized bladder is a challenge faced by urologists. We present three patients with defunctionalized bladders who initiated bladder cycling utilizing overnight continuous saline infusion via enteral feeding pump for bladder salvage and subsequent transplantation.

Putting the coach in the game: Current and future state of surgical coaching in pediatric urology.

BACKGROUND: Surgical coaching has been proposed as a mechanism to fill gaps in proficiency and encourage continued growth following formal surgical training. Coaching benefits have been demonstrated in other surgical fields; however, have not been evaluated within pediatric urology. The aims of this study were to survey members of The Societies for Pediatric Urology (SPU) to assess the current understanding and utilization of surgical coaching while gauging interest, potential barriers and personal goals for participation in a coaching program. METHODS: Following IRB approval, members of the SPU were invited to electronically complete an anonymous survey which assessed 4 domains: 1) understanding of surgical coaching principles, 2) current utilization, 3) interest and potential barriers to participation, and 4) personal surgical goals. To evaluate understanding, questions with predefined correct answers on the key principles of coaching were posed either in multiple choice or True/False format to the SPU membership. RESULTS: Of the 674 pediatric urologists invited, 146 completed the survey (22%). Of those, 46% correctly responded the definition of surgical coaching. Coaching utilization was reported in 27% of respondents currently or having previously participated in a surgical coaching program. Despite current participation rates, only 6 surgeons (4%) have completed training in surgical coaching, despite 79% expressing interest to participate in a surgical coaching program. The most influential barrier to participating in a coaching program was time commitment. Respondents largely prioritized technical and cognitive skill improvement as their primary goals for coaching (see figure below). CONCLUSIONS: While interest in surgical coaching is high among pediatric urologists, the principles of surgical coaching were not universally understood. Furthermore, formal coach training is markedly deficient, representing a gap in our profession and an opportunity for significant avenues for improvement, especially for technical and cognitive skills. Development of a coaching model based on these results would best suit the needs of pediatric urologists providing that the time commitment barrier for these endeavors can be mitigated and/or reconciled.

People with spina bifida use their MACE on long-term follow-up: A single institutional retrospective cohort study.

OBJECTIVE: While the Malone antegrade continence enema (MACE) facilitates bowel movements in patients with spina bifida (SB) and neuropathic bowel, little is known about its long-term use. We aimed to assess long-term MACE use and potential risk factors for disuse. METHODS: All patients with SB who underwent MACE procedures at our institution were retrospectively reviewed. Main outcome was MACE disuse (no longer catheterizing the MACE for antegrade enemas) based on self-report on a clinic questionnaire, or medical record for patients last seen before introducing the questionnaire 5 years ago. Survival analysis used two timeframes: time after surgery (Analysis 1) and chronological age: accounting for older children reaching adulthood earlier (Analysis 2). RESULTS: Overall, 411 patients (54% female, 78% shunted, 65% augmented) underwent a MACE procedure at median 7.9 years old (median follow-up: 8.4 years). Thirty-three (8%) patients no longer used their MACE. Most common reasons for doing so were channel/stomal stenosis (61%) and excision at colostomy or other abdominal surgery (12%). Bowel management afterwards included oral agents ± enemas (55%), Chait tube (30%), colostomy (12%). After correcting for differential follow-up, 90% of participants used their MACE at 10 years and 87% at 15 years after surgery. Based on chronological age, 97% used their MACE at 15 years old, 92% at 20 and 81% at 30 (Summary Figure). On multivariate analysis, umbilical MACEs were 2.4 times more likely to be disused than right lower quadrant MACEs (p = 0.04). Without correcting for chronological age (Analysis 1), patients undergoing MACE surgery at older ages were more likely to stop MACE use (p = 0.03). However, after accounting for chronological age (Analysis 2), patients undergoing a MACE procedure at older ages were no more likely to stop its use (p = 0.47, Figure). Gender, SB type, shunt status, mobility status, bladder augmentation or a urinary catheterizable channel were not associated with stopping MACE use (p ≥ 0.10). COMMENT: Participants were regularly followed in multi-disciplinary SB clinics. We did not assess continence, satisfaction or long-term urinary channel use, making it premature to recommend optimal stomal locations. CONCLUSIONS: Most patients with SB followed by a multi-disciplinary team continue using their MACE; 1% stopped MACE use annually, particularly after adolescence. This strongly suggests it is an effective bowel management method and transitioning to self-care plays a role in maintaining long-term MACE use. Umbilical MACEs may be at high risk of disuse, but all people with a MACE can benefit from support as they transition to adult care.

Sexual activity and function of adult men with spina bifida.

OBJECTIVE: Data on sexual function of men with spina bifida (SB) is limited. We aimed to assess sexual activity and erectile dysfunction (ED) in a large international sample of men with SB. METHODS: Men with SB (≥18yo) were recruited in an international online survey via clinics and social media. We collected data on demographics, ambulation (Hoffer classification), penile rigidity (Erection Hardness Score), sexual activity and ED (International Index of Erectile Function). Non-parametric tests were used. RESULTS: A total of 162 men (median age 35, 62% shunted, 38% community ambulators) reported sexual desire similar to the general population (p = 0.82), but 55% were dissatisfied with their sex life (Summary Table). Overall, 36% reported full penile rigidity with erections, more commonly with better ambulation (p = 0.01), 69% had ever experienced orgasm and 84% ejaculated. In 44 men (27%) attempting sexual intercourse in the last 4 weeks, 59% had ED (11% severe, 7% moderate, 14% mild-moderate, 27% mild). In this group, 91% of men reporting less than full penile rigidity had ED, compared to 30% with full penile rigidity (p = 0.001). Overall, partnered non-genital contact in the last 3 months was reported by 56%, solo masturbation: 62%, partnered intercourse: 48% (31% vaginal). Of 54 men who used phosphodiesterase type 5 inhibitors (PDE5I), 80% reported improved erections, 56% improved intercourse. Overall, 40% reported non-genital erogenous zones as most pleasurable, especially with poorer ambulation (p = 0.002, chest/nipples: 73%). COMMENT: Strengths of this study include anonymous, voluntary, online participation maximizing participation of a heterogenous, international population. Whenever available, we compared findings to published values for the general population. Since romantic and sexual activity is a complex intersection of interest, opportunity and ability, a more comprehensive assessment was beyond the study's scope. Future work will focus on the interplay with issues like incontinence. CONCLUSIONS: ED was frequent among men with SB, especially in men with poorer ambulation. PDE5 inhibitors may be beneficial. Partnered sexual activity was reported by half of the men, although it may not involve penetrative intercourse.

Contrast-enhanced voiding urosonography (CEVUS) as a safe alternate means of assessing vesicoureteral reflux in pediatric kidney transplant patients.

BACKGROUND: Although voiding cystourethrogram (VCUG) is currently the gold standard in VUR evaluation, there is ionizing radiation exposure. Contrast-enhanced voiding urosonography (CEVUS) uses ultrasound contrast agents to visualize the urinary tract and has been reported to be safe and effective in VUR evaluation in children. CEVUS application has yet to be specifically described in VUR evaluation in the pediatric kidney transplant population. The purpose of this study was to report the use of CEVUS and VCUG in evaluating and managing VUR in pediatric renal transplant patients. METHODS: Retrospective review was conducted for pediatric kidney transplant patients (18 years and younger) who underwent VCUG or CEVUS to assess for transplant VUR from July 2019 through June 2021. Demographic information, reason for VUR evaluation, fluoroscopy time, and postimaging complications were evaluated. Costs of imaging modalities were also considered. RESULTS: Eight patients were evaluated for transplant VUR during the study period. Of the 3 patients who underwent VCUG, all 3 had VUR (median grade 3). Median fluoroscopy time was 18 s and dose-area product was 18.7 uGy*m2 . Of the 5 patients who underwent CEVUS, 4 had VUR (median grade 4). There were no complications for either modality. Based on clinical and radiographic findings, patients were recommended no intervention, behavioral modification, or ureteral reimplantation. The total cost of CEVUS was $800 less than that of VCUG. CONCLUSION: CEVUS can provide an alternate means of safely evaluating VUR in kidney transplant patients with similar outcomes, potentially lower costs, and no exposure to ionizing radiation.

Solo and Partnered Sexual Behavior Among an International Sample of Adults With Spina Bifida.

BACKGROUND: Spina bifida (SB) may differentially impact adults' participation in solo and partnered sexual behaviors, but little research investigates this topic. AIM: Describe solo and partnered sexual behaviors among an international sample of adult men and women with SB. MAIN OUTCOME MEASURES: Ever participated (no/yes) and recent participation (>1 year ago/within last year) in solo masturbation, cuddled with a partner, held hands with a partner, kissed a partner, touched a partner's genital, had genitals touched by a partner, gave a partner oral sex, received oral sex from a partner, vaginal sex, anal sex, and sex toy use. METHODS: Data were drawn from a larger cross-sectional, internet-based survey assessing the sexual behaviors of an international sample of men and women with SB. We used logistic regression to examine the impact of background (gender, age, independent living, and relationship status) and health (shunt status, ambulation, and genital sensation) factors on each outcome. RESULTS: The sample consisted of 345 respondents aged 18-73 years from 26 nations. Very few (<3%) had no lifetime experience with any solo or partnered behaviors; 25.0% reported participating in all behaviors at some point in their lives. The median number of past year sexual behaviors (of 16 total) was 7. Lifetime and recent participation were associated with demographic and health factors. CLINICAL IMPLICATIONS: Despite impairment, adults with spina bifida do participate in solo and partnered sexual behaviors. Medical personnel who work with this population should include discussions about sexuality as part of routine care. STRENGTHS & LIMITATIONS: Although this research measured solo and partnered sexual behavior in large international sample of adults with spina bifida, it is limited by its cross-sectional retrospective design and non-clinical convenience sample. CONCLUSION: Despite disability, many adults with SB participate in solo and partnered sexual behavior. Medical and psychosocial supports are needed to help adults in this population enjoy sexuality in a healthy and safe manner. Hensel DJ, Misseri R, Wiener JS, et al. Solo and Partnered Sexual Behavior Among an International Sample of Adults With Spina Bifida. J Sex Med 2022;19:1766-1777.

Integration of child life services in the delivery of multi-disciplinary differences in Sexual Development (DSD) and Congenital Adrenal Hyperplasia (CAH) care.

INTRODUCTION: Multiple studies have demonstrated the benefit of incorporating certified child life specialist (CCLS) services in various aspects of pediatric care. Although the significance of psychosocial support of patients with Disorders of Sexual Development (DSD) and Congenital Adrenal Hyperplasia (CAH) is increasingly recognized, the involvement of CCLS services into the DSD and CAH multidisciplinary care model has yet to be described. OBJECTIVE: To evaluate the feasibility, acceptability, and patient and family experience of routinely incorporating CCLS services into the multidisciplinary DSD and CAH care model. STUDY DESIGN: As part of a quality improvement initiative, CCLS services were routinely incorporated in the multidisciplinary DSD and CAH clinics at our institution. Encounters for patients seen in clinic between July 2018 through October 2019 were reviewed for demographic information, DSD diagnosis classification, CCLS documentation, and whether an exam under anesthesia (EUA) was required due to an incomplete clinical exam. CCLS documentation was reviewed for assessments, interventions, whether patients tolerated their physical exams, time of CCLS services, and additional CCLS support beyond the physical exam. All patients were limited to one physical exam per clinic visit. RESULTS: Out of the 45 encounters with CCLS involvement, 42 (93.3%) exams were well-tolerated. CCLS assessments considered patient development, communication considerations, temperament, medical stressors, coping preferences, and patient preferences for activities and distractions. Interventions included preparing patients for their physical exams, encouragement before and during exams, addressing patient stressors, distractions and coping mechanisms, and advocating for the patient. No patients required an EUA. DISCUSSION: The CCLS aimed to provide families with a sense of control during clinic visits and teach them to advocate for themselves. The CCLS helped prepare and distract patients for their clinic visit and addressed the sensitive nature of the physical exam by focusing on the emotional and development needs of patients. CCLS contributions to a positive patient experience are consistent with multiple studies demonstrating the benefit of CCLS services for pediatric care. This quality improvement initiative ultimately helped to create a positive experience for patients and families. CONCLUSION: This study demonstrates the feasibility, acceptability, and positive impact of CCLS services in the delivery of patient and family-centered care for patients with DSD and CAH as part of the multidisciplinary team model.

Digital photography in the evaluation and management of female patients with congenital adrenal hyperplasia: A standardized protocol for quality improvement.

INTRODUCTION: Digital photography can be securely stored in the medical record and enhance documentation of physical exam findings and monitor wound healing. A standardized protocol that respects the dignity of the patient and maintains the fidelity of objective documentation is needed for patients with differences in sexual development (DSD) and congenital adrenal hyperplasia (CAH). OBJECTIVE: The purpose of this study was to evaluate the feasibility, acceptability, and applications of a HIPAA-compliant digital photography protocol in the care of female patients with CAH. STUDY DESIGN: A protocol for standardized digital imaging including consent, permission, data capture, and storage in the electronic medical record (EMR) was implemented. Patients undergoing physical examination during multidisciplinary CAH clinic visits, preoperative evaluation, and postoperative follow-up from October 2020 through May 2021 were included. Male patients with CAH, patients with clitoromegaly or urogenital sinus not from CAH, and patients seen through telehealth were excluded. Consent was obtained from caregivers and permission from patients. Images of the exam were taken during clinic visits or at the time of surgery with no identifying features included. Images were directly uploaded into the patient's chart in the HIPAA-protected EMR separate from other clinical documentation and not stored on personal devices. RESULTS: There were 17 patients with CAH seen with median age 6 years (range 2 weeks-18 years). There was a median of 3 photos per patient during the study period with cooperation from both the patient and their caregiver. Amongst the patients seen, 6 patients underwent reconstruction with a median of 10 photos per patient. Images were available and used for preoperative planning and counseling. Patients with previous images did not require repeat examinations and were subjected to fewer genital examinations. Fewer providers were present during exams. Images taken by providers and caregivers during the postoperative period were used to monitor wound healing and surgical outcomes. DISCUSSION: Protocol implementation improved patient care by reducing the number of exams and number of providers present, enhancing clinical documentation, and providing a means of tracking the physical exam over time. This was in concordance with guidelines for limiting exams for patients with DSD and CAH. Implementation of best practices for medical photography was important in respecting patient dignity and confidentiality. CONCLUSION: Implementation of standardized digital photography was feasible and acceptable to patients and caregivers. Digital images reduced the need for repeat physical examination and provided a visual means of enhancing clinical documentation.

Urinary continence disparities in patients with anorectal malformations.

PURPOSE: While fecal incontinence is a primary concern for many children with anorectal malformations (ARM), urinary incontinence is also prevalent in this population. Racial, ethnic, and socioeconomic disparities in urinary continence have been observed in other conditions, but have not been previously evaluated in ARM. We aimed to evaluate urinary continence and associated demographic and socioeconomic characteristics in individuals with ARM. METHODS: We performed a multicenter retrospective study of ARM patients evaluated at sites participating in the Pediatric Colorectal and Pelvic Learning Consortium (PCPLC).  We included all patients with ARM 3 years and older. The primary outcome was urinary continence which was categorized as complete (no accidents), daytime (accidents at night), partial (rare or occasional accidents), and none (frequent accidents or no continence). We evaluated for associations between urinary continence and race, sex, age, insurance status, and adoption status, employing Kruskal-Wallis and trend tests. Secondary outcomes included bladder management strategies such as clean intermittent catheterization and continence surgery. P-value < 0.05 was considered significant. RESULTS: A total of 525 patients with ARM were included. Overall, 48% reported complete urinary continence, and continence was associated with greater age. For school-aged children (age ≥ 5 years), 58% reported complete continence, while 30% reported none. Public insurance and adoption status were associated with decreased likelihood of incontinence. CONCLUSIONS: We observed a novel finding of disparities in urinary continence for children with ARM related to insurance and adoption status. Further investigation regarding the etiologies of these inequities is needed in order to affect clinical outcomes.

Bedside Intervention for Neonatal Hydrometrocolpos and Imperforate Hymen.

Low complexity cases of neonatal hydrometrocolpos from imperforate hymen are typically treated with hymenotomy or hymenectomy. Although this is commonly performed in the operating room, bedside management is also safe and effective. We present a case of prenatally diagnosed, simple hydrometrocolpos treated via bedside hymenotomy on the first day of life. The patient received periprocedural antibiotics prior to the procedure and had full resolution of hydrometrocolpos without any complication or need for further intervention. Early intervention and administration of periprocedural antibiotics allowed for safe management of this condition without the risks and resources of treatment in the operating room.

Sacral nerve stimulator success after filum section for refractory dysfunctional voiding.

INTRODUCTION: Filum section (FS) has been used to treat tethered cord syndrome (on MRI or occult) in pediatric patients with refractory dysfunctional voiding (DV). While controversial, some groups have previously reported significant improvement in patients' symptoms after FS, even in the presence of a normal preoperative spinal MRI. Until recently, it was our practice to refer patients with DV to pediatric neurosurgery for evaluation, MRI, and possible FS. OBJECTIVES: We report our experience with sacral nerve stimulator (SNS) placement for pediatric patients with refractory DV after failed FS with the primary outcome being complications and explantations. The secondary outcome being change in quality of life. STUDY DESIGN: We retrospectively reviewed all consecutive patients <18 years old who underwent second stage SNS placement after FS at our institution between November 2012 and December 2019. We abstracted rate of 2nd stage implantation, complication, and explantation. We also collected age-appropriate preoperative and postoperative 15-question quality of life questionnaires (PedsQL™). The PedsQL scores ranged 0-100, higher numbers correlating with higher quality of life. A paired t-test was used for statistical analysis. RESULTS: Overall, 23 children proceeded to the second stage SNS due to persistent symptoms following FS. Median age at SNS implantation was 10.3 years (IQR 7.5-11.8 years), and 13 were female (56.5%). There were no intraoperative complications. Median follow-up was 2.8 years (IQR 1.1-3.7 years). One patient had the SNS removed due to a need for MRI, one for resolution of symptoms, and 4 patients underwent lead revision for lead fracture and return of symptoms (17.4%). All 15 patients who completed both preoperative and postoperative PedsQL reported significantly improved overall scores after SNS (Figure). Median scores improved from 61.7 to 86.7 (p < 0.0001). DISCUSSION: Symptom relief in the child with refractory DV using SNS is not new. However, we sought to review our results in those with previous FS for tethered cord syndrome. While our study is limited by its small size, we assessed both surgical and patient-reported outcomes. Our patients' marked improvement in quality of life is similar to that of other reported pediatric SNS cohorts. CONCLUSION: SNS placement after FS is feasible, safe, and can result in significant improvement in overall quality of life. Given these findings, we have changed our practice to offer SNS in patients with refractory DV with a normal lumbosacral spinal MRI. For those with MRI abnormalities, we seek neurosurgical evaluation for FS (if deemed necessary) prior to considering SNS.

Misdiagnosis of Congenital Posterior Urethroperineal Fistula and Comparison With Urethral Duplications and Rectourethral Fistula.

Congenital posterior urethroperineal fistula (CUPF) is a urothelium-lined tract between the posterior urethra and perineum. This condition is rare and has been proposed to be a urethral duplication variant. A case of CUPF that was misdiagnosed and surgically treated as a rectourethral fistula is presented. The clinical presentation, diagnosis, and treatment of CUPF are discussed and compared with those of Y-type urethral duplications and H-type rectourethral fistulas.

Incidence of nephrolithiasis after bladder augmentation in people with spina bifida.

INTRODUCTION: Risks of nephrolithiasis after bladder augmentation in people with spina bifida (SB) remain unclear. Annual incidence of nephrolithiasis in the general population is 0.01% for 10-14 years old, 0.07% for 15-19 years old and 0.2% for 20-24 years old. Our aim was to assess the incidence and risk factors of nephrolithiasis in SB patients after augmentation. METHODS: Patients with SB and augmentation followed at our institution were retrospectively reviewed (born ≥1972, surgery 1979-2019). Patients were screened annually with renal bladder ultrasound and abdominal radiograph. Main outcome was nephrolithiasis treatment. Kaplan-Meier survival and Cox proportional hazards analysis were used. Possible predictors were assessed using stepwise forward selection (variables with p < 0.1 on univariate analysis included in multivariate analysis). RESULTS: 427 patients with SB and augmentation were included (51.8% female, 74.9% shunted). Median age at augmentation was 8.5 years (median follow-up: 12.4 years, ileum segment: 81.0%, bladder neck procedure: 60.7%, urinary channel: 74.2%) and 28.8% developed bladder stones. Overall, 47 (11.0%) patients were treated for nephrolithiasis. After correction for differential follow-up, nephrolithiasis was treated in 7.3% at 10 years, 13.2% at 15 years, and 18.0% at 20 years (Figure). Patients presented with either a urinary tract infection (46.8%), on screening (44.7%), or pain (8.5%). Stones were treated percutaneously, endoscopically or by ESWL (63.8%/34.0%/10.7%, respectively). Most were calcium stones (58.3%). On multivariate analysis, compared to younger patients, patients augmented at ≥10 years of age had 1.84 times the risk of nephrolithiasis (p = 0.01). Nephrolithiasis was more common in those who developed bladder stones (HR = 3.00, p < 0.0001). Among those with both renal and bladder stones, bladder stones typically preceded nephrolithiasis (55.2%), were treated concurrently (31.0%) and 13.8% occurred after nephrolithiasis. Gender, wheelchair use, bowel segment used, MACE and skeletal fractures were not associated with higher nephrolithiasis risk (p ≥ 0.11). DISCUSSION: This study of a large cohort of SB patients with long-term follow-up highlights that the risk of nephrolithiasis is cumulative and related to bladder stone formation, age at augmentation and time since augmentation. An association with bladder stones suggests potential shared metabolic causes. The study's retrospective design likely led to underestimating the risk of nephrolithiasis by not capturing spontaneously passed stones. CONCLUSION: Approximately 1% of patients with SB develop nephrolithiasis annually after augmentation. Close long-term surveillance after augmentation is strongly indicated, as nephrolithiasis incidence in augmented patient with SB is at least 10 times higher than general population. Patients with bladder stones are especially at risk.

Troubleshooting problems with antegrade continent enema flushes: The Indiana university algorithm.

INTRODUCTION: Antegrade continence enemas have transformed treatment and improved the quality of life in children with neuropathic bowel, refractory constipation and fecal incontinence. However, it can often be difficult to manage problems that arise with ACE flushes. OBJECTIVE: We report the use of an online tool designed for nurses to help troubleshoot calls for problems associated with antegrade continence enema (ACE) flushes as well as update our algorithm for managing refractory constipation/fecal incontinence in a large single institution experience. STUDY DESIGN: We developed an online tool based on our management protocol for managing refractory constipation/fecal incontinence (Summary Figure). Patient frequency and bother was assessed prior to the intervention and at one month after the intervention using 5- and 4-point Likert scales respectively. Patient demographics, MACE/Chait information, type of difficulty, volume of flush, and use of additives were recorded. Nurses were also interviewed prior to using the tool and 14 months after its development with regards to taking these phone calls and the helpfulness of the tool. RESULTS: Over 14 months, the nurses received 22 patients calls via the nursing triage line regarding ACE flush problems and prospectively collected data. Half reported multiple episodes of fecal incontinence. Other complaints included no response to flush (8, 36.4%), occasional episodes of liquid fecal incontinence (2, 9.1%) and time of flush exceeding 60 min (1, 4.5%). While patients did not report decreased frequency of problems as a result of nurse troubleshooting using the ACE algorithm (2.5 vs. 2, p = 0.55), patients did report a significant improvement in their bother scores (4 vs. 2, p = 0.02). All but one patient reported that the recommendation was "some" or "a lot" helpful on follow up interview. The nurses all indicated that the tool helped "some" or "a lot." DISCUSSION: The antegrade continence enema is valuable in managing neurogenic bowel, refractory constipation, and fecal incontinence, however, some patients experience problems with flushes that can often be difficult to manage. CONCLUSION: Patients reported less bother with their bowel issues after using our algorithm for managing refractory constipation/fecal incontinence and nurses reported that the tool was helpful.

Use of retrograde pyelogram to plan for miniature open incision in pediatric pyeloplasty.

INTRODUCTION: As robotic-assisted surgery becomes increasingly utilized for pediatric ureteropelvic junction (UPJ) obstruction, open surgeons have countered by using muscle-splitting, miniature (≤2 cm) incisions. To prepare for this type of incision during pyeloplasty, it is necessary to define the exact location of the UPJ. The use of retrograde pyelogram (RPG) at the time of pyeloplasty helps the surgeon to identify the exact location of UPJ, and thus be able to use a muscle-splitting, miniature incision for open pyeloplasty. OBJECTIVE: We hypothesize that when performing a muscle-splitting, miniature incision open approach; preoperative RPG frequently changes the traditional pyeloplasty flank incision at the tip of the 11th or 12th rib. MATERIALS & METHODS: A retrospective review of open pyeloplasties performed by a single surgeon at our institution from 7/1/2010 to 12/31/2018 was performed to determine rate of use of RPG, open pyeloplasty incision location and to determine what factors are predictive of incisional site. RESULTS: 114 of 122 (93.4%) patients with 115 renal units had pyeloplasties with preoperative RPG performed. Of the 8 procedures without RPG, two had a pelvic kidney diagnosed prior to surgery, two had narrow ureteric orifices that were difficult to cannulate, and four had associated reflux. In 31/115 (27%) pyeloplasties the incision was changed from a standard incision position at the 11th or 12th rib to an alternative incision (i.e. extended muscle-transecting incision at the tip of the 11th or 12th rib, or to an alternate incision site including Gibson, McBurney's incision, or low anterior abdominal incision). 84/115 (73.0%) had a miniature (<2 cm) incision at the tip of the 11th or 12th rib. Grade IV hydronephrosis was a significant predictor for changing the traditional incision site (p = 0.02). Preoperative nephrostomy tube insertion was also associated with an increased likelihood of having an alternate incision (p = 0.04). Incision site was not significantly affected by age of the patient at surgery, patient sex, size of the affected kidney, T1/2 times of <30 min, split function of <30%, kidney length differential, or laterality. CONCLUSION: The consistent use of RPG prior to pyeloplasty helps surgeons to plan for a small muscle-splitting, miniature open incisions. In our experience, 27% of pyeloplasties required alternative incision sites based on the results of pre-operative RPG.

Provider perspectives on shared decision-making regarding hypospadias surgery.

INTRODUCTION: Many parents experience decisional conflict and decisional regret around hypospadias surgery. The utilization of a shared decision-making (SDM) process may mitigate these issues, however addressing the principal components of the SDM process is a complex task that requires the investment of providers. OBJECTIVE: The purpose of this study was to facilitate a discussion about SDM anchored on hypospadias with pediatric urology and general pediatric providers to explore perspectives, clinical applications and barriers to adopting SDM in clinical practice. STUDY DESIGN: We conducted two focus groups in order to engage pediatric urology and general pediatric providers in guided discussions about SDM anchored on hypospadias. All activities were audio recorded and professionally transcribed. The transcripts were analyzed by three coders using directed qualitative content analysis techniques to identify themes and relationships between themes to inform the development of an affinity diagram (Extended Summary Figure). RESULTS: Two focus groups were held; one with seven pediatric urology providers in November 2018 and one with ten general pediatric providers in January 2019 (median age 51 years, 88.2% Caucasian, 58.8% female, 70.6% physicians and 29.4% nurse practitioners). Both groups identified some of the key components of SDM including engaging families in decision-making, informing them about treatment options and clarifying values/preferences (Extended Summary Figure). They thought that SDM was useful for discussing preference-sensitive conditions (e.g. hypospadias) and addressing parental compliance. General pediatric providers also suggested that SDM helped them avoid unnecessary referrals to specialists. Both groups identified parental, provider and systemic barriers to the adoption of SDM: a) desire for paternalism, b) misperceptions about medical evidence, c) completion of parental decision-making prior to the clinical visit, d) provider bias/lack of interest and e) time constraints/productivity pressures. DISCUSSION: Providers who care for hypospadias patients are knowledgeable about SDM and its potential clinical applications. They identified several potentially modifiable barriers to the adoption of a SDM process about hypospadias surgery in a pediatric clinical setting. CONCLUSIONS: Based on feedback from providers, we plan to implement a hypospadias decision aid early in the parental decision-making process about hypospadias such as in the postpartum unit and at well-child visits in the newborn period and provide a provider training session about SDM to address the identified knowledge gaps.

Knowledge gaps and information seeking by parents about hypospadias.

INTRODUCTION: Parents making complex decisions about hypospadias surgery may experience anxiety and uncertainty related to multiple sources of information with questionable reliability and limited relevance to their concerns. OBJECTIVE: The purpose of this study was to identify knowledge gaps, information-seeking behaviors, and informational needs of parents making decisions about hypospadias surgery as an initial step in the development of a hypospadias decision aid. STUDY DESIGN: We conducted semi-structured interviews with English-speaking parents (≥18 years of age) of children with hypospadias, inquiring about gaps in their knowledge, information-seeking behaviors, and perceived informational needs (Extended Summary Table). We conducted interviews until no new themes were identified, analyzing them iteratively using open, axial, and selective coding. We used grounded theory methods to develop an explanation of the information-seeking process about hypospadias surgery. RESULTS: Of the 43 eligible parents, 16 mothers and 1 father (39.5%) of 16 patients participated: 7 preoperative and 9 postoperative with distal (8) and proximal (8) meatal locations. Parents were aged 21-43: 15 Caucasians and 2 African-Americans. Educational backgrounds and marital status varied across subjects. We identified five categories of knowledge gaps relating to hypospadias surgery: 1) epidemiology, 2) timing/technique, 3) perioperative experience, 4) long-term cosmetic outcome, and 5) long-term risk of complications. Information-seeking behaviors included searching the internet, discussing hypospadias with the child's pediatrician and/or urologist, and obtaining information from their social network. Most parents sought information online prior to and/or after consultation with the urologist, from parent blogs/forums, medical school/hospital websites, journal articles, and medical databases. Perceived informational needs included clear and reliable information online, images of mild degrees of hypospadias, and images of repaired hypospadias cases. According to the parents, video testimonials from other parents would help them relate to others in their social network and build confidence about the surgical process. DISCUSSION: The findings of this study contribute to our understanding of parental decision-making about hypospadias surgery by highlighting specific knowledge gaps and informational needs for inclusion in a decision aid. Study limitations include a small sample size that is typical and expected for qualitative research studies and the underrepresentation of fathers, minorities, and same-sex couples. CONCLUSIONS: The Internet is the primary source of information most parents use to address knowledge gaps about hypospadias. Parents expressed concerns about the reliability and clarity of information and identified informational needs including parent testimonials and a wide variety of hypospadias images for inclusion in a decision aid.

Estimating and tracking renal function in children and adults with spina bifida.

PURPOSE: Estimated glomerular filtration rate (eGFR) in the general population is stable in children after 2 years of age until adulthood. In the first three decades after age 18, eGFR decreases by 0.3-0.8 ml/min/1.73 m2/year. Little data exists regarding eGFR changes in the spina bifida (SB) population given variability in muscle mass. In the absence of a validated SB-specific eGFR formula, the performance of different eGFR formulas may vary. We performed a cross-sectional study (1) to determine trends in eGFR with increasing age in children and adults with SB and (2) to compare eGFRs calculated using different formulas. METHODS: We retrospectively reviewed records of patients 2-50 years old with SB followed at our institution (2014-2019). We determined eGFR using four pediatric formulas (2-17 years: CKiDSCr, CKiDCys, CKiDSCr-Cys, ZappitelliSCr-Cys) and four adult formulas (18 + years: MDRDSCr, CKD-EPISCr, CKD-EPICys, CKD-EPISCr-Cys). One eGFR per patient was included (most recent eGFR for those with serial measurements). Patients were categorized as chronic kidney disease (CKD) stage 2 (eGFR 60-89) and Stage 3+ (<60). Non-parametric tests, linear regression, and Spearman's correlation were used for analysis. RESULTS: Among 209 children with SB (median age 10.3 years), depending on the formula used, eGFR decreased by -0.7 to -1.8 ml/min/1.73 m2/year (CKiDCys, CKiDScr, p ≤ 0.001), remained stable (CKiDSCr-Cys, p = 0.41), or increased by +2.7/year (ZappitelliSCr-Cys, p < 0.001) (Figure). The proportion of children with CKD 2 or higher varied between formulas (11.5-58.9%, p < 0.001). Correlations between pediatric formulas were negligible to moderate. Comparing any two formulas, 12.0-65.6% of children were assigned a different CKD stage. Among 164 adults (median age 26.3), eGFR decreased for each formula (range: -1.3 to -2.2/year, p ≤ 0.01) (Figure). The proportion of adults with CKD 2 or higher varied between formulas (9.2-30.5%, p < 0.001). Correlations between adult formulas were moderate to very high. Comparing any two formulas, 8.5-26.8% of adults were assigned a different CKD stage. COMMENT: We cannot reliably determine whether eGFR changed during childhood. Among adults, eGFR decreased with age for every formula evaluated at greater than twice the general population rate. Without a validated SB-specific eGFR formula, we are left with formulas providing different results. CONCLUSIONS: Estimated GFR among adults with SB appears to deteriorate at a higher rate than in the general population. Due to lack of precision of accepted eGFR formulas in the SB population, this may be a real phenomenon, an artifact of inaccurate eGFR formulas, or both. A validated SB-specific eGFR formula is needed.