Comparing binary & ordinal definitions of urinary & stool continence outcomes: Data from the National Spina Bifida Patient Registry.

INTRODUCTION: The National Spina Bifida Patient Registry (NSBPR) assesses bladder and bowel incontinence using ordinal categories, but prior NSBPR analyses employed binary classification. Our aims were to 1) perform the first NSBPR analysis of bladder and bowel incontinence as ordinal outcomes to compare to the binary definition and subject variables; 2) explore the correlation of incontinence with undergarment usage, and 3) assess incontinence status following continence surgeries. METHODS: Data from NSBPR participants' most recent clinic visit from 2013 to 2020 were analyzed. Ordinal categories of incontinence were compared to previously used binary definitions. Incontinence surgical outcomes were analyzed for those with data at least three months post-operatively. Chi-square tests evaluated associations among categorical variables. Univariate and ordinal logistic regression models were used to test associations of ordinal incontinence status with patient and condition factors. Statistical tests were 2-sided; p values < 0.05 were considered significant. RESULTS: Analysis of 7217 individuals using ordinal incontinence outcomes showed little difference from previously used binary outcomes. The final multivariable logistic regression models with ordinal multinomial outcomes showed that associations of incontinence with age, sex, race/ethnicity, health insurance, level of lesion, and continence management technique were similar to prior studies. Among those reporting never being incontinent of both bladder and bowel, 14% reported using protective undergarments. Of the 500 individuals who had bladder outlet surgery, 38% reported never being incontinent of urine. Of 1416 individuals who had appendicostomy (ACE) bowel surgery, 48% reported never being incontinent of stool. DISCUSSION: Our current analysis showed that ordinal continence outcome classification had similar continence findings as previous studies using the binary definition of continence. Expanding the binary definition of continence to include monthly episodes of incontinence did not greatly increase the proportion of continent individuals and, therefore, would have not likely made meaningful differences in continence outcomes in prior NSBPR analyses. However, it is known that even mild incontinence can affect quality of life, therefore, capturing any level of incontiennce is of clinical importance. Confirmation of the association of continence outcomes with sociodemographic, condition-related, and interventional factors with both approaches further validates previous analyses using the binary definition of continence. CONCLUSION: The previously used binary definition of bladder and bowel continence appears robust. Undergarment choice was a poor surrogate for reported incontinence. After bladder and bowel continence surgeries, 38% and 48%, respectively, reported never being incontinent.

Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study.

PURPOSE: This study aimed to analyze organ system-based causes and non-organ system-based mechanisms of death (COD, MOD) in people with myelomeningocele (MMC), comparing urological to other COD. METHODS: A retrospective review was performed of 16 institutions in Canada/United States of non-random convenience sample of people with MMC (born > = 1972) using non-parametric statistics. RESULTS: Of 293 deaths (89% shunted hydrocephalus), 12% occurred in infancy, 35% in childhood, and 53% in adulthood (documented COD: 74%). For 261 shunted individuals, leading COD were neurological (21%) and pulmonary (17%), and leading MOD were infections (34%, including shunt infections: 4%) and non-infectious shunt malfunctions (14%). For 32 unshunted individuals, leading COD were pulmonary (34%) and cardiovascular (13%), and leading MOD were infections (38%) and non-infectious pulmonary (16%). COD and MOD varied by shunt status and age (p < = 0.04), not ambulation or birthyear (p > = 0.16). Urology-related deaths (urosepsis, renal failure, hematuria, bladder perforation/cancer: 10%) were more likely in females (p = 0.01), independent of age, shunt, or ambulatory status (p > = 0.40). COD/MOD were independent of bladder augmentation (p = >0.11). Unexplained deaths while asleep (4%) were independent of age, shunt status, and epilepsy (p >= 0.47). CONCLUSION: COD varied by shunt status. Leading MOD were infectious. Urology-related deaths (10%) were independent of shunt status; 26% of COD were unknown. Life-long multidisciplinary care and accurate mortality documentation are needed.

Single-port hidden incision endoscopic (HIdES) pediatric nephrectomy via pfannenstiel incision.

Laparoendoscopic single-site surgery (LESS) and hidden incision endoscopic surgery techniques are increasingly used in pediatric urology. For pediatric nephrectomy, access through a single Pfannenstiel incision is novel and may offer cosmetic benefit. In this retrospective study, we describe this approach and assess operative outcomes associated with this technique. Patients who underwent LESS nephrectomy through a single Pfannenstiel incision had minimal blood loss, short length of stay, low risk of surgical complications, and satisfactory wound healing. The Pfannenstiel approach to LESS nephrectomy is feasible, versatile, and achieves excellent operative and cosmetic outcomes, although direct comparison to other approaches is warranted.

Education and employment as young adults living with spina bifida transition to adulthood in the USA: A study of the National Spina Bifida Patient Registry.

AIM: To describe the education and employment transition experience of young adults with spina bifida (YASB) and investigate factors associated with employment. METHOD: We queried education and employment data from the US National Spina Bifida Patient Registry from 2009 to 2019. We applied generalized estimating equations models to analyze sociodemographic and disease-related factors associated with employment. RESULTS: A total of 1909 participants (850 males, 1059 females) aged 18 to 26 years contributed 4379 annual visits. Nearly 84% had myelomeningocele and, at last visit, the median age was 21 years (mean 21 years 5 months, SD 2 years 10 months). A total of 41.8% had at least some post-high school education, and 23.9% were employed. In a multivariable regression model, employment was significantly associated with education level, lower extremity functional level, bowel continence, insurance, and history of non-shunt surgery. This large, national sample of YASB demonstrated low rates of post-secondary education attainment and employment and several potentially modifiable factors associated with employment. INTERPRETATION: Specific sociodemographic, medical, and functional factors associated with employment are important for clinicians to consider when facilitating transition for YASB into adulthood. Additional research is needed to understand the impact of cognitive functioning and social determinants of health on transition success in YASB. WHAT THIS PAPER ADDS: There were low education attainment and employment rates in a large sample of young adults with spina bifida. Specific sociodemographic, medical, and functional factors are associated with employment. Some employment-associated factors, such as continence and self-management skills, are modifiable.

Framing the picture: Impact of radiographic imaging on parental vesicoureteral reflux management preferences.

INTRODUCTION/OBJECTIVE: Given the variety of treatment options for vesicoureteral reflux (VUR), shared decision making between clinicians and parents is essential. Despite its importance, shared decision making is limited by the framing effect - people process the same information differently depending on how it is presented. Studies have also demonstrated that showing patients their radiology images can impact behaviors. In this pilot study, we sought to determine if showing parents radiographic images could serve as a framing tool that impacts the decision of whether to pursue surgery, endoscopic intervention, or conservative management for VUR. METHODS: We designed a survey instrument which provided background on VUR and a hypothetical scenario of a 2-year-old child with VUR who had a breakthrough febrile urinary tract infection (UTI). Guideline-concordant management options were presented: (1) change antibiotics, (2) endoscopic management, or (3) open or laparoscopic surgery. All options were similarly presented regarding risks, benefits, and length of stay. Respondents were randomized into a group with no image accompanying the clinical scenario or a group which had a labeled image of a voiding cystourethrogram (VCUG) demonstrating unilateral VUR. Respondents also answered demographic and health experience questions. The instrument was published on Amazon's Mechanical Turk online work interface which provides reliable and validated results in VUR experiments. Parents aged 18-60 years old were eligible. Responses with failed attention questions, duplicate internet addresses, or submission times <1 or >30 min were disqualified. Data were analyzed using t-test, chi-square, and multinomial logistic regression. Sensitivity analyses were performed after excluding all responses submitted under 2, 3, and 5 min. RESULTS: There were a total of 914 responses, 426 met inclusion criteria. The presence or absence of a VCUG image did not result in a statically significant difference in the management decision (p = 0.081). Multinomial logistic regression demonstrated that prior UTI experience influenced the management decision (p = 0.027). Sensitivity analyses revealed a significant difference in the management decision when excluding responses <5 min (p = 0.039). CONCLUSION: In this analysis, there was no statistically significant framing effect by radiographic images on parental management decision for VUR. Multinomial analyses suggested that prior experience with UTI has an impact on VUR management decisions. These results need to be considered within the limitations of this pilot study - the respondents were given a hypothetical clinical scenario and the survey instrument cannot replace an in-office discussion. Further analyses on framing and its role in pre-operative counseling is warranted.

Financial toxicity among individuals with spina bifida and their families: A qualitative study and conceptual model.

INTRODUCTION: Spina bifida is the most common permanently disabling birth defect in the United States and requires lifelong, multi-specialty care. The cost of such care has the potential to result in financial toxicity - the 'objective financial burden' and 'subjective financial distress' which can negatively impact clinical outcomes. While this concept has been extensively studied in other areas of medicine, particularly oncology, financial toxicity has not yet been examined in pediatric urology or in individuals with spina bifida and their families/caregivers. OBJECTIVE: To qualitatively explore the presence of financial toxicity in individuals with spina bifida and their caregivers with the objective of identifying themes and creating a conceptual model. MATERIALS AND METHODS: We conducted semi-structured interviews with individuals with spina bifida and/or their caregivers with the aim of eliciting information regarding financial distress associated with spina bifida care. Interviews were transcribed and qualitative thematic analysis was performed to identify recurring themes. These insights were used to create a conceptual model of financial toxicity among individuals with spina bifida. RESULTS: A total of 14 interviews were conducted (total of 6 patients and 13 parents/caregivers). Average patient age was 17.9 years. Five dominant themes were identified: 1) resources (insurance type, community support, etc.), 2) direct costs (copays, deductibles, travel expenses, etc.), 3) indirect costs (lost work time, hindered career advancement, resource navigation burden, etc.), 4) coping (work adjustments, decreased spending, etc.), and 5) affect (lack of control, uncertainty, worry, etc.). These insights were used to create a conceptual model. DISCUSSION: This is the first study to explore financial toxicity in spina bifida and establish a conceptual model. Our findings are corroborated by prior spina bifida literature and are closely mirrored by studies in cancer patients. Given that financial toxicity is associated with negative outcomes in other medical domains, the impact of financial toxicity on health outcomes among individuals with spina bifida warrants further study, particularly in instrument development to better understand and quantify financial toxicity in this group. CONCLUSION: Financial toxicity is a concern among individuals with spina bifida and their caregivers. This concept will need to be investigated further in order to develop validated measurement tools, identify solutions, and provide optimal care; our conceptual model will help guide these future investigations.

Association between race and in-hospital outcomes in children with spina bifida following inpatient urologic surgery.

PURPOSE: Post-operative complication rates may vary among racial and/or ethnic groups and have not been previously described in individuals with spina bifida (SB) undergoing urologic surgery. The aim of this study was to compare in-hospital complication frequencies of individuals with SB following urologic surgery by race/ethnicity. METHODS: The Nationwide Inpatient Sample was used to identify pediatric patients with SB who underwent inpatient urologic procedures. A pediatric cohort (<18 years old) with SB that underwent urologic surgery were assessed. All analyses report weighted descriptive statistics, outcomes, and race/ethnicity was the primary predictor variable. The primary outcome of interest was post-operative complications which were defined using NSQIP ICD-9 code definitions. Secondary analysis included length of stay (LOS), and encounter cost was estimated using the cost-to-charge ratio files provided by the Healthcare Cost and Utilization Project. RESULTS: The unadjusted model showed no differences in complications, LOS, and cost. In the adjusted model there were no differences in complications, LOS, and cost between Black and White encounters. However, Hispanic ethnicity was associated with a 20%(95%CI: 4-40%) increase in LOS and 18%(95%CI: 2-35%, p = 0.02) increase in cost compared to White encounters. CONCLUSION: There was no evidence of variation for in-hospital complication rates among racial/ethnic groups undergoing urologic surgery. Hispanic ethnicity was associated with higher costs and longer LOS in pediatric SB encounters.

The Importance of Early Diagnosis and Management of Pediatric Neurogenic Bladder Dysfunction.

Neurogenic bladder dysfunction is a major source of urologic morbidity in children, especially in those with spina bifida (SB). Complications from progression of bladder dysfunction can include urinary tract infections (UTIs), urinary incontinence, upper tract deterioration, and renal dysfunction or failure. In these children, there has been a recent trend toward proactive rather than expectant management of neurogenic bladder. However, there is a lack of consensus on how to best achieve the three main goals of neurogenic bladder management: 1) preserving kidney function, 2) achieving continence (if desired by the family/individual), and 3) achieving social and functional urologic independence (if appropriate). Hence, our objective was to perform a narrative literature review to evaluate the approaches to diagnosis and management of pediatric neurogenic bladder dysfunction, with special focus on children with SB. The approach strategies vary across a spectrum, with a proactive strategy on one end of the spectrum and an expectant strategy at the other end. The proactive management strategy is characterized by early and frequent labs, imaging, and urodynamic (UDS) evaluation, with early initiation of clean intermittent catheterization (CIC) and proceeding with pharmacotherapy, or surgery if indicated. The expectant management strategy prioritizes surveillance labs and imaging prior to proceeding with invasive assessments and interventions such as UDS or pharmacotherapy. Both treatment strategies are currently utilized and data have historically been inconclusive in demonstrating efficacy of one regimen over the other. We performed a narrative literature evaluating proactive and expectant treatment strategies as they relate to diagnostics and management of Spina Bifida. From the available literature and our practice, a proactive strategy favors greater benefit in preventative management and may decrease risk of renal dysfunction compared with expectant management.

Neurosurgical procedures for children with myelomeningocele after fetal or postnatal surgery: a comparative effectiveness study.

AIM: To compare the frequencies of neurosurgical procedures to treat comorbid conditions of myelomeningocele in patients who underwent fetal surgery versus postnatal surgery for closure of the placode. METHOD: By utilizing the National Spina Bifida Patient Registry in a comparative effectiveness study, 298 fetal surgery patients were matched by birthdate (±3mo) and spina bifida clinic site with one to three postnatal surgery patients (n=648). Histories were obtained by record review on enrollment and yearly subsequently. Multivariable Poisson regression was used to compare frequencies of procedures between cohorts, with adjustments for sex, ethnicity, insurance status, spinal segmental level of motor function, age at last visit recorded in the Registry, and, for shunt revision in shunted patients, age at cerebrospinal fluid (CSF) diversion. RESULTS: The median age at last visit was 4 years. In fully adjusted analyses in patients aged at least 12 months old, fetal surgery was associated with decreased frequency of CSF diversion for hydrocephalus by ventriculoperitoneal shunt insertion or endoscopic third ventriculostomy compared with postnatal surgery (46% vs 79%; incidence rate ratio=0.61; 95% confidence interval [CI] 0.53-0.71; p<0.01). Over all ages, fetal surgery was associated with decreased frequency of Chiari decompression for brainstem dysfunction (3% vs 7%; incidence rate ratio=0.41; 95% CI 0.19-0.88; p=0.02). Also over all ages, differences were not significant in frequencies of shunt revision in shunted patients (53% vs 55%; incidence rate ratio=0.87; 95% CI 0.69-1.11; p=0.27), nor tethered cord release for acquired spinal cord dysfunction (18% vs 16%; incidence rate ratio=1.11; 95% CI 0.84-1.47; p=0.46). INTERPRETATION: Even with the variations inherent in clinical practice, fetal surgery was associated with lower frequencies of CSF diversion and of Chiari decompression, independent of covariates. What this paper adds Fetal surgery was associated with lower frequencies of cerebrospinal fluid diversion and decompression of Chiari II malformation than postnatal surgery. Frequencies of ventriculoperitoneal shunt revision and tethered cord release were not significantly different between cohorts.

Challenges in pediatric urologic practice: a lifelong view.

The role of the pediatric urologic surgeon does not end with initial reconstructive surgery. Many of the congenital anomalies encountered require multiple staged operations while others may not involve further surgery but require a life-long follow-up and often revisions. Management of most of these disorders must extend into and through adolescence before transitioning these patients to adult colleagues. The primary goal of management of all congenital uropathies is protection and/or reversal of renal insult. For posterior urethral valves, in particular, avoidance of end-stage renal failure may not be possible in severe cases due to the congenital nephropathy but usually can be prolonged. Likewise, prevention or minimization of urinary tract infections is important for overall health and eventual renal function. Attainment of urinary continence is an important goal for most with a proven positive impact on quality of life; however, measures to achieve that goal can require significant efforts for those with neuropathic bladder dysfunction, obstructive uropathies, and bladder exstrophy. A particular challenge is maximizing future self-esteem, sexual function, and reproductive potential for those with genital anomalies such as hypospadias, the bladder exstrophy epispadias complex, prune belly syndrome, and Mullerian anomalies. Few endeavors are rewarding as working with children and their families throughout childhood and adolescence to help them attain these goals, and modern advances have enhanced our ability to get them to adulthood in better physical and mental health than ever before.

Immune Expression in Children With Vesicoureteral Reflux: A Pilot Study.

OBJECTIVE: To perform an exploratory, descriptive pilot study of the systemic and local immune environment in patients with vesicoureteral reflux (VUR) and bladder-bowel dysfunction (BBD). METHODS: Consecutive children with VUR undergoing intravesical ureteral reimplantation were enrolled. Patients were assessed for presence of BBD by reported patient history and validated questionnaire. Fresh blood and bladder tissue, collected at the time of surgery, were immediately processed for analysis. Immune cell compositions were determined via flow cytometry. Immune cell activation was also defined at the time of analysis. LegendPlex assay analysis was utilized to define levels of circulating chemokines and cytokines. RESULTS: A total of 7 patients were enrolled. Although percentages of circulating immune cells in the blood of those with VUR/BBD and VUR alone were similar, within bladder tissue, VUR/BBD demonstrated increased immune infiltrates compared to VUR alone. Bladder sample analysis showed that B cells, and Effector Memory and Naïve T cell percentages were significantly increased in VUR/BBD patients compared to VUR patients. T cell expression of PD1 was increased in bladder tissues of BBD/VUR. Additionally, analysis of circulating neutrophils displayed significantly increased upregulation of PDL-1 in patients with VUR/BBD vs those with VUR only. CONCLUSION: These pilot data suggest an immune-rich microenvironment is present within VUR. Severity of inflammation appeared to correlate with presence of BBD. This implies that targeting pelvic inflammation may be a novel therapy for children with VUR- or non-VUR-related BBD. Follow-up studies are currently underway.

Neurogenic bowel treatments and continence outcomes in children and adults with myelomeningocele.

PURPOSE: Neurogenic bowel dysfunction (NBD) is a common comorbidity of myelomeningocele (MMC), the most common and severe form of spina bifida. The National Spina Bifida Patient Registry (NSBPR) is a research collaboration between the CDC and Spina Bifida Clinics. Fecal continence (continence) outcomes for common treatment modalities for NBD have not been described in a large sample of individuals with MMC. NSBPR patients with MMC and NBD were studied to determine variation in continence status and their ability to perform their treatment independently according to treatment modality and individual characteristics. METHODS: Continence was defined as < 1 episode of incontinence per month. Eleven common treatments were evaluated. Inclusion criteria were established diagnoses of both MMC and NBD, as well as age ⩾ 5 years (n= 3670). Chi-square or exact statistical tests were used for bivariate analyses. Logistic regression models were used to estimate the odds of continence outcomes by age, sex, race/ethnicity, level of motor function, and insurance status. RESULTS: At total of 3670 members of the NSBPR met inclusion criteria between November 2013 and December 2017. Overall prevalence of continence was 45%. Prevalence ranged from 40-69% across different treatments. Among continent individuals, 60% achieved continence without surgery. Antegrade enemas were the most commonly used treatment and had the highest associated continence rate. Ability to carry out a treatment independently increased with age. Multivariable logistic regression showed significantly higher odds of continence among individuals aged ⩾ 12 years, female, non-Hispanic white, and with private insurance.

Delayed presentation of urethrocutaneous fistulae after hypospadias repair.

BACKGROUND: Delayed urethrocutaneous fistula (UCF) presentation after hypospadias repair is rarely reported. The aim of this study is to report our experience with delayed UCF presenting more than 5 years after hypospadias repair. METHODS: We conducted a retrospective review of patients who underwent UCF repair (CPT codes 54,340 and 54,344) at our institution between 1997 and 2017. Delayed UCF presentation was defined as a single normal urinary stream after initial hypospadias repair and subsequent presentation of a UCF/s urinary stream more than 5 years after initial hypospadias or UCF repair. Demographic and clinical data were reviewed after approval from our institutional review committee. RESULTS: We identified 12 patients with delayed UCF. The mean age at hypospadias repair was 12.3 months (Range 6-32). The mean time to delayed UCF presentation was 11.5 years (Range 7.1-15.8). Four patients with delayed UCF (33.3%) required additional surgery for UCF recurrence with a mean time to recurrence of 2.2 years (Range < 1-5.6). CONCLUSIONS: Delayed UCF presentation can occur more than 15 years after initial repair. Pubertal penile skin changes and increased genital awareness in older children may be contributing factors as all but one presented at age 10 years or older. LEVEL OF EVIDENCE: III.

Pediatric Neurogenic Bladder and Bowel Dysfunction: Will My Child Ever Be out of Diapers?

CONTEXT: Managing patient and parent expectations regarding urinary and fecal continence is important with congenital conditions that produce neurogenic bladder and bowel dysfunction. Physicians need to be aware of common treatment algorithms and expected outcomes to best counsel these families. OBJECTIVE: To systematically evaluate evidence regarding the utilization and success of various modalities in achieving continence, as well as related outcomes, in children with neurogenic bladder and bowel dysfunction. EVIDENCE ACQUISITION: We performed a systematic review of the literature in PubMed/Medline in August 2019. A total of 114 publications were included in the analysis, including 49 for bladder management and 65 for bowel management. EVIDENCE SYNTHESIS: Children with neurogenic bladder conditions achieved urinary continence 50% of the time, including 44% of children treated with nonsurgical methods and 64% with surgical interventions. Patients with neurogenic bowel problems achieved fecal continence 75% of the time, including 78% of patients treated with nonsurgical methods and 73% with surgical treatment. Surgical complications and need for revisions were high in both categories. CONCLUSIONS: Approximately half of children with neurogenic bladder dysfunction will achieve urinary continence and about three-quarters of children with neurogenic bowel dysfunction will become fecally continent. Surgical intervention can be successful in patients refractory to nonsurgical management, but the high complication and revision rates support their use as second-line therapy. This is consistent with guidelines issued by the International Children's Continence Society. PATIENT SUMMARY: Approximately half of children with neurogenic bladder dysfunction will achieve urinary continence, and about three-quarters of children with neurogenic bowel dysfunction will become fecally continent. Most children can be managed without surgery. Patients who do not achieve continence with nonsurgical methods frequently have success with operative procedures, but complications and requirements for additional procedures must be expected.

Patterns of inpatient care for prostate cancer in men with spina bifida.

BACKGROUND: Advances in medical care have increased the long-term survival of patients with spina bifida. Despite this growing population, limited knowledge is available on age-related illnesses in adults with spina bifida, particularly prostate cancer for which there is no published data. OBJECTIVE: Our aim was to describe inpatient care for prostate cancer in men with spina bifida in the United States. METHODS: We performed a descriptive, retrospective study utilizing the 1998 to 2014 National Inpatient Sample from the Healthcare Cost and Utilization Project. Weights were applied to the sample to make national level inferences. We identified all adult encounters (≥18 years old) with prostate cancer and spina bifida. RESULTS: We identified 253 encounters (mean age 64.9 years). Most were Caucasian (67.5%) and had public insurance (61.6%). 44% of encounters included a major urologic procedure. 38.4% of encounters included prostatectomies, 28.3% included lymph node dissections, and 7.8% included cystectomies. Robotic surgery was performed in 9.4%. Mean length of stay was 5.6 days (95% CI: 3.7, 7.5). The average total cost was $14,074 (95% CI: $8990.3, $19,158.6). CONCLUSIONS: In this first-ever exploration of inpatient care for prostate cancer in men with spina bifida, we found that length of stay and total costs were higher in men with spina bifida. Almost half of encounters included a prostatectomy, cystectomy, and/or lymph node dissection. More detailed investigations are necessary to assess comparative treatment outcomes and complications, including prevalence and mortality rates of prostate cancer among adult men with SB.

Parental Preferences for Vesicoureteral Reflux Treatment: A Crowd-sourced, Best-worst Scaling Study.

OBJECTIVE: To quantitatively evaluate parental preferences for the various treatments for vesicoureteral reflux using crowd-sourced best-worst scaling, a novel technique in urologic preference estimation. METHODS: Preference data were collected from a community sample of parents via 2 best-worst scaling survey instruments published to Amazon's Mechanical Turk online community. Attributes and attribute levels were selected following extensive review of the reflux literature. Respondents completed an object case best-worst scaling exercise to prioritize general aspects of reflux treatments and multiprofile case best-worst scaling to elicit their preferences for the specific differences in reflux treatments. Data were analyzed using multinomial logistic regression. Results from the object-case provided probability scaled values (PSV) that reflected the order of importance of attributes. RESULTS: We analyzed data for 248 and 228 respondents for object and multiprofile case BWS, respectively. When prioritizing general aspects of reflux treatment, effectiveness (PSV = 20.37), risk of future urinary tract infection (PSV = 14.85), and complication rate (PSV = 14.55) were most important to parents. Societal cost (PSV = 1.41), length of hospitalization (PSV = 1.09), and cosmesis (PSV = 0.91) were least important. Parents perceived no difference in preference for the cosmetic outcome of open vs minimally invasive surgery (P = .791). Bundling attribute preference weights, parents in our study would choose open surgery 74.9% of the time. CONCLUSION: High treatment effectiveness was the most important and preferred attribute to parents. Alternatively, cost and cosmesis were among the least important. Our findings serve to inform shared parent-physician decision-making for vesicoureteral reflux.

Baseline Urinary Tract Imaging in Infants Enrolled in the UMPIRE Protocol for Children with Spina Bifida.

PURPOSE: The lifetime risk of renal damage in children with spina bifida is high but only limited baseline imaging data are available for this population. We evaluated a large prospective cohort of infants with spina bifida to define their baseline imaging characteristics. MATERIALS AND METHODS: The UMPIRE Protocol for Young Children with Spina Bifida is an iterative quality improvement protocol that follows a cohort of newborns at 9 United States centers. Using descriptive statistics, we report the initial baseline imaging characteristics, specifically regarding renal bladder ultrasound, cystogram and dimercaptosuccinic acid nuclear medicine scan. RESULTS: Data on 193 infants from 2015 to 2018 were analyzed. Renal-bladder ultrasound was normal in 55.9% of infants, while 40.4% had Society for Fetal Urology grade 1 to 2 hydronephrosis in at least 1 kidney, 3.7% had grade 3 to 4 hydronephrosis in either kidney and 21.8% had grade 1 or higher bilateral hydronephrosis. There was no vesicoureteral reflux in 84.6% of infants. A third of enrolled infants underwent dimercaptosuccinic acid nuclear medicine renal scan, of whom 92.4% had no renal defects and 93.9% had a difference in differential function of less than 15%. CONCLUSIONS: The majority of infants born with spina bifida have normal baseline imaging characteristics and normal urinary tract anatomy at birth. This proactive protocol offers careful scheduled surveillance of the urinary tract with the goal of lifelong maintenance of normal renal function and healthy genitourinary development.