Summary Figure Research Articles

Day-to-day variations and effects of urinary and fecal incontinence among adults with spina bifida: an ecological momentary assessment diary pilot study

BackgroundNo studies have evaluated the day-to-day variations in urinary incontinence (UI) and fecal incontinence (FI) among adults with spina bifida (SB). We aimed to 1) describe variations in UI/FI over 30 days, 2) assess factors associated with the negativity effects of incontinence, and 3) correlate anxiety about incontinence and health-related quality of life (HRQOL) among adults with SB (exploratory). MethodsAdults with SB participated in a larger 30-day smartphone-based ecological momentary assessment (EMA) study of well-being and incontinence. We analyzed baseline demographics, temporal variables (baseline UI/FI, incontinence, and negativity on days prior), and incontinence episode-specific variables (number of daily episodes, incontinence interval, quantity). Urinary and fecal incontinence-related anxiety (UIA/FIA) was measured on a 5-point Likert scale (“How anxious were you because of urine/stool leaks today?”), HRQOL with QUALAS-A (scores range 0-100, 0=lowest HRQOL). Mixed-effects, random intercept ordinal and linear regression was used. ResultsEighty-nine adults participated at a median age of 33 years old (71% female, 53% shunted, 49% community ambulators). Participants contributed 2578 total diary days: 61% were associated with any incontinence (41% UI only, 6% FI only, 13% both). Eighty-two (92%) adults reported UI on a median of 16 days, but experiences varied: 6% had a single episode, while 33% had UI on 28-30 days (Summary Figure). Seventy adults (79%) reported FI on a median of 5 days, less frequently than UI (p<0.001), but experiences varied: 11% had a single FI episode, while 31% had FI on 10 or more days. Fewer participants reported any UIA than FIA (50% vs. 72%, respectively, p<0.001). On multivariate regression, (1) higher UIA was reported by individuals with higher baseline UIA, higher UIA on days prior, multiple daily episodes and higher UI quantity (p<=0.02), while (2) higher FIA was reported by those with lower baseline HRQOL, fewer FI episodes on days prior, higher FIA on days prior, and higher UI quantity (p<=0.02). FIA was correlated with lower end-of-study HRQOL (p=0.03). DiscussionInstances of incontinence are not uniform experiences. Their effects vary with factors beyond the actual episode. This suggests novel potential points of intervention to improving long-term HRQOL among people with incontinence. ConclusionDay-to-day experiences of UI and FI vary among adults with SB across multiple dimensions. Anxiety about incontinence when it occurs varies not only based on individual- and episode-specific characteristics, but also on incontinence in the preceding days. Operationalizing these insights into potential clinical interventions warrants further investigation.

Experiences and preferences of women with CAH and parents about disclosure of childhood surgery

Complete disclosure of childhood genital surgery to patients with congenital adrenal hyperplasia (CAH) is a critical part of CAH care. There are no guidelines or uniform recommendations on the timing and content of surgical disclosure discussions. Our objective was to describe the experiences and preferences of females with CAH and parents of females with CAH who underwent childhood genital surgery regarding surgical disclosure. We conducted an anonymous cross-sectional online survey of females with CAH (46XX, ≥16 years [y] old) and parents of females with CAH who underwent genital surgery before age 4y in North America. Participants reported experiences, preferences, and advice about initial ("first time you were told") and complete disclosure ("told all details"). Non-parametric statistics and qualitative analysis were used. Participants included 59 females with CAH (median age: 37y, 92% White, 93% non-Hispanic) and 41 parents (median: 36y, 85% White, 93% non-Hispanic, daughter median: 26y). The 76% of females who received complete disclosure were younger (median age: 33y) and underwent surgery more recently (median decade: 1980s) than the 14% who received only initial disclosure (median: 47y, 1970s) and the 10% who did not receive any disclosure (median: 60y, 1960s, p=0.0003, Summary Figure). Females reported median ages of initial and complete disclosure as 7-10y and 11-13y, respectively. Disclosure was preferred by 98% of females with initial disclosure by age 14y and complete disclosure by 18y. Parents reported similar findings. Most disclosures were by mothers (initial: 82%, complete: 64%). Doctors were more involved in complete vs. initial disclosures (complete: 47%, initial: 13%, p<0.001). Qualitative analysis of advice about surgical disclosure revealed 8 themes. Disclosure of childhood genital surgery to women with CAH has increased over time. Although timing of disclosure varied, women preferred disclosure, and that it be initiated before age 14y and completed by age 18y.

Development of a prototype of a patient-reported outcomes measure for hypospadias care, the Patient Assessment Tool for Hypospadias (PATH)

Patient-reported outcome measures (PROMs) for hypospadias care are lacking, and most existing instruments were developed without patient input. The objective of this study was to 1) use our previously developed Hypospadias Journal for concept elicitation in a sample of adolescent and young adult hypospadias patients and 2) develop a new hypospadias PROM. We recruited English-speaking males ages 13-30 living in the United States with a self-reported history of hypospadias through targeted advertisements on Facebook and Instagram from March to June 2022. Using a Qualtrics screening survey ineligible respondents were identified using automated fraud detection and manual review. Consenting participants were sent an electronic Hypospadias Journal containing brief creative writing exercises and multiple-choice scales to facilitate participant reflections about genital appearance, urination, sexual function, and psychosocial well-being. Demographics were summarized using descriptive statistics. Human-centered design researchers synthesized the journals' key themes to 1) create an affinity diagram with hypospadias-related quality of life (QOL) domains and 2) draft items for the PROM covering each domain and sub-domain. Journal participants were asked to complete a survey to 1) rank hypospadias QOL domains, subdomains, and draft items for the PROM, and 2) explore their preferences for item phrasing. In a small group virtual interview, a urologist and a hypospadias patient reviewed and revised draft PROM items, and a final PROM was created. Of the 411 completed screening surveys, 391 were ineligible. Journals were sent to 20 eligible participants. Of these, 12 completed journals: 8 adults; 4 adolescents (11 surgical/1 non-surgical): 66.7% White, 8.3% Black, 16.7% Asian, 8.3% >1 race. The meatal location was distal for 41.7%, proximal for 41.7%, unknown/missing for 16.7%. We identified four hypospadias-related quality-of-life domains and 13 respective sub-domains (Extended Summary Figure) of these, two were novel domains: 1) knowledge about the condition/treatment and comfort with treatment decision, and 2) impact on relationships with caregivers, medical providers, and sexual partners. A final PROM prototype, the Patient Assessment Tool for Hypospadias (PATH) was created, covering all QOL domains identified by participants. We created a simple, brief hypospadias PROM to screen for salient topics to be addressed by providers in the clinical setting. Limitations include the small sample size and limited clinical details about participants. Our study provides a hypospadias PROM that is ready for psychometric assessment in a larger sample.

Needs of transgender children and adolescents presenting to an urban gender health program

Youth who identify as transgender and gender diverse (TGD) are increasingly presenting to pediatric providers. Gender-affirming surgery is often delayed until after a patient reaches the age of majority; however, patients may desire surgery at a younger age. We explore the specific clinical needs of this vulnerable population, including surgical requests. We present a cross-sectional study of patient intake interviews at time of presentation to our gender health program from 2017 to 2020. We summarize patient demographics, medical histories, and gender-affirming care needs by gender identity and age of presentation. Of 92 patients analyzed, those included were 19 trans girls, 55 trans boys, and 18 non-binary individuals. The median age of our sample was 15 (range 5-17). The median age (IQR) while first questioning gender was 10 (7-12). Sexual orientation was variable with 28 (43%) not sure/unknown. The majority of patients present for primary care services (grade schoolers 75%, early teens 78%, and late teens 77%, p=0.97) and hormone management (grade schoolers 42%, early teens 62%, and late teens 77%, p=0.06). Late teens were more likely to present for surgical services (49%) compared to grade schoolers (25%) and early teens (11%), p=0.001. Prior psychiatric diagnoses were common in all age groups. Trans girls were interested in a variety of affirming procedures whereas trans boys and non-binary individuals primarily sought chest surgery (see summary figure). Pediatric gender affirming care needs are varied and multidisciplinary within our center. By age 16, about half of TGD individuals are seeking surgical services. On average, there was a 4-5 year delay from age at first questioning one's gender and presenting to our gender health program. Primary care physicians in particular may prepare to serve this complex population by familiarizing themselves with treatment needs, including developing a network of competent surgical referrals.

Usability testing of the Set Brave Goals app, a continence goal-selection app for children with spina bifida

IntroductionThe Set Brave Goals app is the first digital health app (DHA) aimed at helping children with spina bifida (SB) aged 8-17 years old to select and track their urinary and fecal continence goals. Developed by children, parents, providers and researchers, its usability, or appropriateness to a purpose (“user-friendliness”), remains unknown. In an alpha testing stage, our aim was to determine the usability of the app prior to clinical use. MethodsWe recruited children with SB and their parents in clinic and via social media. A recruitment goal of 10 children exceeded industry standard of 5 participants (10 participants are expected to identify approximately 96% of usability problems). Participants downloaded and used the app for a week. They completed a questionnaire, including the System Usability Scale (SUS) and closed and open-ended questions. The SUS is a 10-item validated usability questionnaire most widely used in DHA usability testing (scores range from 0 to 100, 100 representing greatest usability). Median/mean SUS scores for DHAs are 68. Mann-Whitney-U and t-tests were used. ResultsTen children with SB participated (median age: 14 years old, 6 female, 8 shunted, 8 using bladder catheterizations). Twenty parents participated (17 mothers, median age: 42 years old). Median SUS score was 77.5 for children and 73.8 for parents, corresponding to “good” to “excellent” usability (Summary Figure). There were no significant differences between child/parent scores (p=0.69) or those for DHAs (p=0.11). It took a median 5-10 minutes to go through the app (2 parents felt it took too much time). All participants felt the app was easy to understand and use (100%). Most participants would recommend it to children and parents (children: 89%, parents: 80%), and believed it would be valuable to children (90%, 75%) and urologists (80%, 80%). Free text responses related to more varied color schemes, keeping free-text notes within the app and more flexible goal/alarm setting. These changes were incorporated into the app. CommentUsability testing prior to clinical launch identified areas for app improvement. Although this study sample met industry standards, findings are limited by a small group of participants. The app will undergo further refinement during prospective beta testing. ConclusionsThe Set Brave Goals app for children with SB has acceptable usability parameters. This justifies proceeding with wider use to formalize children’s continence goal setting/tracking and testing its value to children with SB and their healthcare providers. Internal review board approval1707207063

Preputial pedicle flap ICG blood flow assessment during proximal hypospadias repair: Development of a standardized protocol

Blood supply to preputial flap drives outcomes ofhypospadias repair. Unfortunately, we onlyhave surgeon's subjective assessment to evaluate flap perfusion which may not be accurate. Indocyanine green (ICG) has been used inamultitude of surgeries for perfusion assessment,however, no standardized protocol has been described for use of ICG in hypospadiasrepairs. The aim of this study is to develop a standardized protocol of ICG use in proximal hypospadias and establish perfusion patterns ofpreputial flaps. A pilot study was conducted using ICG in patientswith proximal hypospadias undergoing first stage repair with a preputial flap. The Stryker SPY PHI system and novel quantification software, SPY-QP, were used for ICG imaging. An adaptive approach was taken to develop and implement a standardized protocol (Summary Figure). Per the protocol, ICG was administered at 3 time points which were felt to be critical for assessment of flap perfusion. Of the study patients who have undergone second stage repair, ICG was also usedto reassess the flap prior to tubularization ofthe urethra. A total of 14 patients underwent first stage hypospadias repair with preputial flaps and intraoperative use of ICG. Median ICG uptake of the prepuce after degloving (dose 1) was 58.5% (IQR 43-76). ICG uptake decreased after flap harvest and mobilization (dose 2) with a median ICG uptake of 34% (IQR 26-46). ICG uptake remained stable after securing the flap in place and closing the skin (dose 3) with a median ICG uptake of 34% (IQR 25-48). ICG was able to delineate subtle findings in the preputial flaps not visible to the naked eye and in one case impacted intraoperative decision making. To date, 5 patients have undergone second stage repair. Flap assessment prior to tubularization of the urethra showed hypervascularity with a median ICG uptake of 159%. A standardized protocol for ICG use in proximal hypospadias was successfully developed and implemented. ICG uptake in the preputial flap decreased with increasing manipulation and mobilization of the flap. ICG was able to detect changes to flap perfusion which were not able to be seen with the naked eye. Reliance on surgeon'ssubjective assessment of flap perfusion may be inadequate and ICG could provide a useful tool for surgeons to improve preputial flap outcomes. ICG may also enhance the learning experience for trainees and early career urologists in these complex surgeries.

A multi-site cultural and linguistic adaptation of a hypospadias decision aid for Latinx communities

Latinx, Spanish-speaking (LSS) patients are more likely to experience decisional conflict and regret about healthcare decisions than non-Hispanic, white, English-speaking patients. To adapt the Hypospadias Hub (Hub), a rigorously developed and tested web-based decision aid (DA), for LSS parents. Guided by the Ecological Validity Model (EVM), a heuristic framework was followed to culturally adapt the Hub (see Extended Summary Figure). In stage 1, recommendations were obtained from a focus group with members of the institution's Latinx Community Review Board (Latinx CRB) and semi-structured interviews with pediatricians with Latinx-focused practices. In stage 2, preliminary cultural modifications were made, the Hub was translated into Spanish, and a second focus group with the Latinx CRB was convened to review the revised Hub. In stage 3, semi-structured interviews with LSS parents of healthy boys (i.e., without hypospadias)≤5 years old were conducted to identify any cultural adaptations and/or usability issues regarding the revised Hub. In stage 4, based on parents' feedback, final revisions to the Hub were made. The focus groups and parent interviews were conducted in Spanish; then, the recordings were professionally transcribed in Spanish and translated into English. Interviews with pediatricians were conducted in English; then, the recordings were professionally transcribed. Three coders conducted a qualitative content analysis to identify areas for revision. Changes were applied iteratively. Participants included 3 Latinx CRB members (2 women, 1 did not disclose gender; mean age=48.3, SD=21.2), 3 non-Latinx pediatricians (2 women, 1 man; mean age=49.6, SD=9.1), and 5 Latinx mothers (mean age=34.0, SD=1.26). Participants recommended: 1) featuring video testimonials from Latinx families or including Spanish voice-overs/subtitles; 2) diversifying racial/ethnic/geographic representation and including extended families in photographs/illustrations; 3) adding information about health insurance coverage and circumcision, 4) reassuring parents that the condition is not their fault, 5) considering cultural values (e.g., reliance on expert advice), and 6) clarifying medical terminology. Feedback related to seven EVM dimensions: concepts, content, context, goals, language, metaphors, and methods. Participants perceived the Hub to be informative in guiding parents' treatment decisions. Revisions were reasonable and acceptable for a linguistic and cultural adaptation for LSS parents. We identified and implemented preliminary cultural modifications to the Hub and applied user-centered design methods to test and revise the website. The product is a culturally appropriate DA for LSS parents. Next, English and Spanish-versions of the Hub will be tested in a randomized controlled trial.

Bladder dysfunction in adolescents with type 1 diabetes

It is increasingly significant that adults with diabetes experience lower urinary tract symptoms, however, there has been limited research in younger individuals with type 1 diabetes. To investigate bladder function using non-invasive urodynamics as a potential indicator of autonomic neuropathy in adolescents with type 1 diabetes. This involved examining the association between urinary flow disturbances, reported symptoms, and results from other autonomic tests. Cross-sectional study enrolling 49 adolescents with type 1 diabetes and 18 control subjects. All participants underwent uroflowmetry and ultrasound scanning, completed the Composite Autonomic Symptom Score (COMPASS)-31 questionnaire, and were instructed to record their morning urine volume and voiding frequencies and report them back. Cardiovascular reflex tests (CARTs) and the quantitative sudomotor axon reflex test (QSART) were performed. The main results are shown in the Summary figure. In this study, urological abnormalities were not significantly more frequent in adolescents with diabetes, however, urological issues were observed. This is supported by previous findings of Szabo etal. who found that adolescents with type 1 diabetes had reduced flow acceleration and time to maximum flow compared to control subjects. In our study, we observed cases with reduced acceleration and prolonged uroflow curves, possibly indicating detrusor underactivity. People with diabetes had a higher risk of nocturia than healthy controls, which our results supported. Some adolescents reported urination twice per night. Based on these findings, it is considered beneficial to ask about urological symptoms annually to determine if more examinations (frequency-volume charts and uroflowmetry) are necessary and/or if any opportunities for treatment optimization exist. However, uroflowmetry has limitations, as bladder filling and emptying is a complex process involving multiple pathways and neurological centers, making it difficult to standardize and evaluate. Another limitation of this study was that our control group was smaller and consisted of fewer males than females, which could affect the results due to differences in anatomy and physiology in the lower urinary tract system. In conclusion, adolescents with type 1 diabetes, as well as healthy adolescents, frequently experience urological symptoms. Although urological abnormalities were not significantly more frequent in adolescents with diabetes in this study, the focus on nocturia and risk for bladder dysfunction seems relevant, even in adolescents without any other tests indicating autonomic dysfunction.

Structural evolution of Ge&lt;sub&gt;20&lt;/sub&gt;Se&lt;sub&gt;80–&lt;/sub&gt;&lt;sub&gt;&lt;i&gt;x&lt;/i&gt;&lt;/sub&gt;Te&lt;sub&gt;&lt;i&gt;x&lt;/i&gt;&lt;/sub&gt; glass networks and assessment of glass properties by theoretical bandgap

Infrared imaging systems are being updated towards greater performance as well as lighter and smaller devices. Developing infrared materials with special properties is a critical for enhancing the performance of optical systems as well as miniaturizing devices. Chalcogenide glass becomes a popular option for advanced IR materials due to its component-property tunability. Se—based glasses such as Ge&lt;sub&gt;33&lt;/sub&gt;As&lt;sub&gt;12&lt;/sub&gt;Se&lt;sub&gt;55&lt;/sub&gt;, Ge&lt;sub&gt;10&lt;/sub&gt;As&lt;sub&gt;40&lt;/sub&gt;Se&lt;sub&gt;50&lt;/sub&gt;, and As&lt;sub&gt;40&lt;/sub&gt;Se&lt;sub&gt;60&lt;/sub&gt;, which completely cover the mid- and long-wave infrared windows, are the most typical materials used in infrared equipment. However, these classical materials can no longer meet the requirements of high-performance imaging systems, and adding more elements such as Te, Ga, Sb, and Ag to enhance the performance is a reliable way to solve this problem. By analysing the structure and properties of the Ge&lt;sub&gt;20&lt;/sub&gt;Se&lt;sub&gt;80–&lt;i&gt;x&lt;/i&gt;&lt;/sub&gt;Te&lt;sub&gt;&lt;i&gt;x&lt;/i&gt;&lt;/sub&gt; glass system, the law of its structure and properties evolving with Te content is illustrated. The obtained typical results are shown below. With the increase of Te content, the glass transition temperature (&lt;i&gt;T&lt;/i&gt;&lt;sub&gt;g&lt;/sub&gt;) increases and then decreases, which is caused by the network structure and the average bond energy; the density and refractive index increase in an approximately linear gradient; the Abbe number gradually increases, while the Vickers hardness hardly changes with Te content; the fracture toughness decreases with the Te content increasing. Aiming at the problem that the average coordination number is unable to evaluate the glass systems composed of two or more elements from the same main group, a theoretical bandgap-glass property evaluation system is successfully established. The functional relationships among parameters such as density, refractive index, Abbe number, and fracture toughness, and theoretical band gap are established for Ge&lt;sub&gt;20&lt;/sub&gt;Se&lt;sub&gt;80–&lt;i&gt;x&lt;/i&gt;&lt;/sub&gt;Te&lt;sub&gt;&lt;i&gt;x&lt;/i&gt;&lt;/sub&gt; glass system as shown in the summary figure, which can be used to rapidly evaluate the glass components and properties.

Association between YouTube® videos and health literacy with postoperative healthcare utilization following pediatric urologic surgery: A randomized trial

Limited caregiver health literacy has been associated with poorer health outcomes in pediatric patients and may limit caregiver understanding of printed education resources. Postoperative healthcare utilization may be related to confusion about instructions or complications. To correlate caregiver health literacy and educational video intervention with postoperative healthcare utilization following ambulatory pediatric urologic surgery. From July through December 2021, a randomized double-blinded trial assessed postoperative healthcare utilization following pediatric urologic surgery. Caregivers were randomized to receive standardized postoperative counseling and printed instructions (control) or access to English-language educational YouTube® videos with standardized postoperative counseling and printed instructions (intervention). Medical record abstraction was completed 30 days following surgery to identify postoperative healthcare utilization with calls, messages, add-on clinic visits, or presentation for urgent or emergent care, and postoperative complications. Target enrollment was achieved with 400 caregivers with 204 in the intervention and 196 in the control groups. There was a 32.5% overall rate of postoperative healthcare utilization. Health literacy was inversely associated with total postoperative healthcare utilization (p<0.001). There was no difference in the incidence of postoperative healthcare utilization between the control and intervention groups (p=0.623). However, on sub-analysis of caregivers with postoperative healthcare utilization (Summary Figure), there were fewer total occurrences in the intervention group (intervention median 1, IQR 1,2.3; control median 2, IQR 1,3; p<0.001). For caregivers with limited health literacy, there was a greater associated reduction in median calls from 2 (IQR 0,2) to 0 (IQR 0,0.5) with video intervention (p=0.016). On multivariate analysis, total postoperative healthcare utilization was significantly associated with limited caregiver health literacy (OR 1.08; p=0.004), English as preferred language (OR 0.68; p=0.018), and older patient age (OR 0.95; p=0.001). Current resources for postoperative education are limited as resources can be written above recommended reading levels and families can have difficulty recalling information discussed during postoperative counseling. Video intervention is an underutilized resource that can provide an additional resource to families with visual and auditory aids and be accessed as needed. Caregiver health literacy was inversely associated with postoperative healthcare utilization. There was no difference in the incidence of postoperative healthcare utilization with video intervention. However, on subgroup analysis, supplemental videos were associated with fewer occurrences of postoperative healthcare utilization, especially in caregivers with limited health literacy. On multivariate regression, health literacy, preferred language, and patient age were significantly associated with total postoperative healthcare utilization.

The effect of resveratrol on aortic growth and function in patients with marfan syndrome

Abstract Background Patients with Marfan syndrome (MFS) have an increased risk of life-threatening aortic complications, mostly preceded by aortic dilatation. Resveratrol, a dietary supplement that intervenes in cellular metabolism has been shown to reduce aortic dilatation rate in a rodent study (1). Purpose To investigate if treatment with Resveratrol reduces aortic dilatation rate in patients with MFS. Methods In this investigator-initiated, prospective, pre-post observational, multicenter trial, we analysed Resveratrol treatment in adults with MFS. Primary endpoint was the change in aortic dilatation rate at five predetermined locations along the thoracic aorta following the daily intake of 500 mg Resveratrol for one year. Aortic dilatation rate was calculated using diastolic Magnetic Resonance Imaging (MRI) aorta diameters acquired at three time points: the most recent MRI examination available prior to inclusion and two Dixon 3D examinations on a 3 Tesla MRI system acquired at baseline and after one year Resveratrol administration. Additionally, we quantified and investigated regional changes in aortic hemodynamics (wall shear stress (WSS), flow velocity and pulse wave velocity (PWV)) determined by 4D-flow MRI. Results A total of 57 participants, mean age of 37 ± 9 years, of which 28 males (49%) were included in the study. Twenty-six (46%) had undergone aortic root replacement prior to the study. All aortic dimensions remained stable after 1.2 ± 0.3 years follow-up. A significant decrease in growth rate (mm/year) in the ascending aorta was observed during the trial compared to pre-trial, from 0.54 (IQR: 0.09–1.39) to 0.00 (IQR: -0.99–0.67), p=0.004. Global PWV and regional mean WSS and velocity did not change after one year of Resveratrol use. PWV (m/s) was significantly higher for patients with a history of aortic root surgery (9.83 ± 1.8 versus 8.42 ± 1.91, p=0.034). Additionally, using Spearman’s ρ correlation coefficient, a positive correlation between PWV and age was found; r=0.452, p=0.003. Conclusion In adult patients with MFS, Resveratrol treatment shows promising results towards stabilizing aortic growth rate after 1.2 year follow up, without major changes in aorta hemodynamics. These findings may warrant a subsequent larger study with a longer follow-up period.RESVcue study summary figure

The intestinal microbiome of children with initial and recurrent nephrolithiasis: A pilot study and exploratory analysis

Kidney stone disease in children is rising disproportionate to the general population, representing a disease population with a distinct biological mechanism as compared to adults. Factors influencing recurrent kidney stone disease in children are poorly characterized and the associations of the intestinal microbiome within sub-populations of kidney stone formers, however, are not well described. We evaluated a pilot cohort of children with nephrolithiasis comparing patients based on recurrent kidney stone episodes and abnormal 24-h urinary parameters, with dual aims to compare the microbiome signal in children with initial and recurrent nephrolithiasis and to explore additional associations in microbiome composition and diversity within this population. Children aged 6-18 with a history of nephrolithiasis, without an active ureteral calculus or antibiotic exposure within 30 days of study entry were eligible to participate. All participants had a 24-h urine study within 6 months of study entry and provided a fecal sample. Microbiome samples were analyzed using 16S ribosomal DNA sequencing techniques for alpha and beta diversity comparing initial and recurrent stone formers as well as microbiome multivariate association (MaAsLin2) to determine differentially abundant taxa. Shotgun sequencing reads were aligned to custom oxidase degradation and butyrate production gene databases (5 databases total). Comparisons for MaAsLin2 and shotgun metagenomics, normalized to sequencing depth, were based on stone recurrence, sex, hypercalcuria (≤4mg/kg/day), hyperoxaluria (≥45 mg/1.73m2), and hypocitraturia (<310 mg/1.73 m2 [females] or<365 mg/1.73 m2 [males]). A total of 16 enrolled children provided samples sufficient for analyses, including 9 girls and 7 boys, of whom 5 had experienced recurrent kidney stone events. Three participants had hypercalcuria, 2 had hyperoxaluria, and 4 had hypocitraturia. Comparisons of Formyl-CoA transferase between index and recurrent urinary stone disease revealed a trend towards higher mean abundance of the gene in initial stone formers (0.166% vs 0.0343%, p=0.2847) (Summary Figure), while trends toward lower biodiversity were also noted in the recurrent stone cohort on both Faith (p=0.06) and Shannon (p=0.05) indices. Exploratory analyses found Eubacterium siraeum to be significantly greater in relative abundance in children with documented hypercalciuria (p=0.001). Our pilot study demonstrates possible signals in both microbial diversity and oxalate gene expression, both of which are lower in recurrent pediatric kidney stone patients. These findings warrant further investigation as a potential diagnostic marker for future kidney stone events.

Reducing post-operative caregiver after-hours phone calls to pediatric urology providers: A quality improvement study

Caregiver phone calls are an important part of caring for pediatric patients. At our institution, residents respond to after-hours caregiver calls. While it is critical for families to be able to reach us for urgent concerns, the ease of access has led to overutilization with many phone calls not meeting the urgent nature that is intended for these calls. The primary aim of this quality improvement project was to decrease the number of non-urgent caregiver calls after-hours. Our secondary aim was to improve compliance with telephone encounter documentation and to standardize the documentation content. We conducted a single institution, multiphase quality improvement project. This started with a preintervention phase which included evaluation of our current state, identifying that most calls were for post-operative patients and that our discharge instructions inadequately detailed when caregivers should call. Notes were also inconsistently documented with no standard format. In the first PDSA cycle, launched on November 1, 2021, a standardized note template was created for documentation of caregiver telephone encounters. The PDSA cycle began on January 1, 2022 and included updates to our post-operative instructions with explicit guidance detailing when to call after-hours. Call data from September 2021 to February 2022 was reviewed including variables such as caller demographics, reason for call, and operative details. Primary outcomes were proportion of post-operative calls within 30 days and non-urgent calls. Secondary outcome was proportion of calls documented appropriately. Phases were categorized as current state (Sep/Oct 2021), PDSA cycle 1 (Nov/Dec 2021), PDSA cycle 2 (Jan/Feb 2022). In our current state, the majority of the calls (66%) were for post-operative patients and 59% of all calls during this period were non-urgent. The proportion of post-operative phone calls stayed stable at 67% during PDSA cycle 1, but decreased to 38% with PDSA cycle 2 with implementation of updated post-operative instructions (Summary figure) (p<0.001). The proportion of non-urgent calls was similar (current state - 68%, PDSA cycle 1 - 72%, PDSA cycle 2-73%, p=0.39) (Summary figure). Call documentation was also similar with a documentation rate of 79% pre-intervention and 87% post-intervention (p=0.21) (Summary figure). With interventions focused on post-operative caregiver instructions, the number of post-operative phone calls decreased. Standardization of documentation was achieved. However, the overall call volume did not change, nor the proportion of non-urgent calls.

Quality of reporting for qualitative studies in pediatric urology—A scoping review

Qualitative research has gained popularity in pediatric urology due to rich data and insights about quantitative results. To date, there has been no study evaluating the comprehensiveness of the reporting of these studies based on established guidelines. The objective of this study is to perform a scoping review of the quality of reporting in recent qualitative studies in pediatric urology based on a predominant checklist, the 21-item Standards of Reporting Qualitative Research (SRQR) and identify areas for improvement. In accordance with the Preferred Reported Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews, we performed a systematic literature search to identify qualitative studies on pediatric urology topics published from 2015 to 2021. We used clustering technology to eliminate articles with unrelated keywords. Articles not in English and those published prior to 2015 were excluded. Two reviewers performed title/abstract screening and full text review and resolved discrepancies by consensus. We reported the median and interquartile range of total SRQR scores (maximum: 21). SRQR-reported items were summarized; overall proportion of reported items for each article was estimated. Bivariate analyses examined the association between study characteristics and SRQR tertile. Simple linear regression was performed to examine the relationship between year and SRQR score. Of the 2562 titles/abstracts screened, 26 studies were included. The most common topics were hypospadias and congenital adrenal hyperplasia (Summary Figure). The median total score was 18.0 of 21 possible items (interquartile range: 3). All studies reported an abstract, problem formulation, purpose/context of the study, data collection methods, integration with prior work, limitations, and ethics review board approval. Most (25/26; 96.2%) reported sampling strategy, data analysis, synthesis/interpretation of findings and links to empirical data. Less fulfilled items included: a title identifying the study as qualitative (11/26, 42.3%), qualitative approach & research paradigm (11/26, 42.3%) and researcher characteristics & reflexivity (9/26, 34.6%). There was no association between study characteristics and SRQR score. There was a statistically significant increase in the SRQR score during the study period (β=1.0, p<0.0001). Studies fulfilled most SRQR checklist items. There was significant improvement in quality during the study period. Limitations include possible recency bias and exclusion of articles due to inconsistent categorizations in Pub Med. The quality and trajectory of qualitative study reporting in pediatric urology is encouraging. SRQR standards should be implemented by journals to continue improving the robustness and transparency of future qualitative manuscripts in pediatric urology.

Spontaneous vesicoureteral reflux resolution curves based on ureteral diameter ratio

Various factors influence the clinical course of vesicoureteral reflux (VUR) in the pediatric population. Distal ureteral diameter ratio (UDR) is an objective measure reflective of ureterovesical junction anatomy that has been shown to independently predict both spontaneous resolution and breakthrough febrile urinary tract infection (UTI) in children with primary reflux. UDR resolution curves were created, hypothesizing that a UDR value existed at which spontaneous resolution was unlikely to occur. UDR was computed by measuring largest ureteral diameter within the pelvis and dividing by the distance between L1-L3 vertebral bodies. Recursive partitioning with 10-fold cross validation methodology for time to event data, utilizing martingale residuals was used to create high and low risk groups based on UDR, and stratified by age at diagnosis and laterality. Three hundred and four patients (226 female, 78 male) were analyzed with a mean age at diagnosis of 1.55±1.98 years. Unilateral reflux (p=0.02), VUR grades 1-3 (p<0.001), and lower UDR (p<0.001) were associated with spontaneous resolution on univariate analysis. UDR values were categorized into risk groups based on recursive partitioning. Low risk patients (those with UDR <0.30) achieved VUR resolution faster and with a continuing rate compared to the high-risk group (≥0.30), which had persistent reflux after 3 years [Summary Figure]. When the 0.30 cutoff was applied randomly to patients in test group, the cutoff significantly discriminated between low and high-risk patients (log rank test p=0.02). Primary VUR is often a self-limiting diagnosis, with conservative management favored in low-risk children, UDR may be used to help distinguish those children who may benefit from intervention. Unlike traditional VUR grading where children with any grade of reflux may spontaneously resolve, there appears to be a consistent UDR cutoff whereby patients are very unlikely to spontaneously resolve, regardless of length of follow-up. Therefore, parents of children with a UDR above the 0.3 cutoff, regardless of VUR grade, may be counselled that VUR is very unlikely to resolve over time - thereby reducing the number of VCUGs and length of time these patients are on prophylactic antibiotic prior to surgical intervention. Children with primary VUR and a UDR of greater than 0.30 are significantly less likely to spontaneously resolve regardless of length of follow-up, and resolution after 3 years was rare. UDR provides objective prognostic information facilitating individualized patient management.

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

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. 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). 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). 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. 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.

Laparoscopic nipple invagination combined extravesical (NICE) reimplantation technique in the management of primary obstructed megaureter

Villanueva challenged Paquin's 5:1 tunnel length and showed in a computer simulation model that UVJ competence was more sensitive to a 2-mm protrusion of ureteric orifice into the bladder compared to an increase in the intravesical tunnel. Thompson later successfully applied the Shanfield technique of invaginating the spatulated primary obstructed megaureter (POM) laparoscopically, causing a nipple antireflux mechanism. In this study we have reported the outcomes of our modification: Nipple Invagination Combined Extravesical (NICE) reimplantation, in the management of POM. Patients with POM who underwent NICE reimplantation (summary figure) were followed up and outcomes were analysed. There were three modifications in this compared to Shanfield technique: 1. Detrusor myotomy was performed before opening the bladder mucosa. The detrusor edges were closed later over the invaginated ureter as an extravesical reimplantation. 2. The ureter was held invaginated inside the bladder mucosal opening by two sutures at 6 & 12 O' clock positions instead of a single suture, 3. The dilated ureter was not spatulated inferiorly, as it automatically opens out later inside the bladder to form a nipple. Eleven patients underwent laparoscopic NICE reimplantation; median age: 6 months (5-24); demographics (R: L=5:6; M:F=7:4). The mean duration of surgery was 133min (110-180) and the mean length of hospital stay was 3.6 days (3-5). There were no immediate post-operative complications in the form of leak in any patient. The median follow-up duration was 20 months (18-29). DRF improved in 7 patients while in 4 it remained static; no patient had deterioration. On follow-up VCUG, none had vesico-ureteric reflux (VUR). The nipple effect could be noticed later at follow-up ultrasonograms and at cystoscopy during stent removal. Paquin emphasised on 5:1 ureteral re-implant tunnel length while Lyon felt that the shape of the ureteral orifice was more important. Shanfield introduced a technique of creating a nipple valve effect by invaginating the ureter intravesically. However it was held by a single suture and had no detrusor backing. NICE reimpantation incorporates a short extra vesical reimplant to the Shanfield technique and literally eliminates post-operative VUR. It is simple and could easily be performed laparoscopically even in small infant bladders. The ureteric orifice kept in line enables future upper-tract access. Our preliminary data suggests that the NICE reimplantation for POM is very successful. Limitations are small numbers and short follow-up. Further larger studies are warranted to authenticate this novel technique.

What is the angle of a banana? The difficulty in reliable assessment of hypospadias chordee

The degree of chordee associated with hypospadias impacts operative management. Unfortunately, poor inter-observer reliability in assessing chordee by multiple methods invitro has been demonstrated. This variability may be related to the fact that chordee is not a discrete angle, but rather an arc-like curvature similar to that of a banana. On an attempt to improve this variability, we assessed the inter-rater reliability of a novel method of chordee measurement and compared it to measurements with a goniometer both invitro and invivo. Invitro assessment of curvature was performed using 5 bananas. Invivo chordee measurement was performed during 43 hypospadias repairs. On invitro and invivo cases, chordee was assessed independently by faculty and resident physicians. Angle assessment was performed in a standard manner with a goniometer and with a smartphone app using ruler measurements of the length and width of the arc (Summary Figure). The proximal and distal aspect of the arc to be measured was marked on the bananas, whereas the penile measurements were taken from the penoscrotal to the sub-coronal junctions. Invitro banana assessment demonstrated strong intra- and inter-rater reliability for length (0.89 and 0.88, respectively) and width measurements (0.97 and 0.96). The calculated angle demonstrated an intra- and inter-rater reliability of 0.67 and 0.67. The banana goniometer/protractor measurements were weak with an intra-rater and inter-rater reliability of 0.33 and 0.21. With hypospadias chordee, the inter-rater reliability was strong for length and width measurements (0.95 and 0.94) and 0.48 for calculated angle. The inter-rater reliability of the goniometer angle was 0.96. Further assessment of inter-rater goniometer reliability was performed relative to degree of chordee as characterized by faculty. The inter-rater reliability for ≤15°, 16-30, and ≥30° was 0.68 (n=20), 0.34 (n=14), and 0.90 (n=9), respectively. When the goniometer angle was classified as ≤15, 16-30, or ≥30° by one physician, it was classified outside of this range by the other physician 23%, 47%, and 25% of the time, respectively. Our data demonstrate significant limitations of the goniometer for assessing chordee invitro and invivo. We were unable to demonstrate significant improvement in chordee assessment using arc length and width measurements to calculate radians. Reliable and precise techniques for measuring hypospadias chordee remain elusive and draw into question the validity and usability of management algorithms employing discrete values.

A multi-site pilot study of a parent-centered tool to promote shared decision-making in hypospadias care

Using a user-centered design approach, we conducted a two-site pilot study to evaluate a decision aid (DA) website, the Hypospadias Hub, for parents of hypospadias patients. The objectives were to assess the Hub's acceptability, remote usability, and feasibility of study procedures, and to evaluate its preliminary efficacy. From June 2021-February 2022, we recruited English-speaking parents (≥18 years old) of hypospadias patients (≤5 years) and delivered the Hub electronically ≤2 months before their hypospadias consultation. We collected website analytic data using an ad tracker plug-in. We inquired about treatment preference, hypospadias knowledge, and decisional conflict (Decisional Conflict Scale) at baseline, after viewing the Hub (pre-consultation), and post-consultation. We administered the Decision Aid Acceptability Questionnaire (DAAQ) and the Preparation for Decision-Making Scale (PrepDM) which assessed how well the Hub prepared parents for decision-making with the urologist. Post-consultation, we assessed participants' perception of involvement in decision-making with the Shared Decision-making Questionnaire (SDM-Q-9) and the Decision Regret Scale (DRS). A bivariate analysis compared participants' baseline and pre/post-consultation hypospadias knowledge, decisional conflict, and treatment preference. Using a thematic analysis, we analyzed our semi-structured interviews to uncover how the Hub impacted the consultation and what influenced participants' decisions. Of 148 parents contacted, 134 were eligible and 65/134 (48.5%) enrolled: mean age 29.2, 96.9% female, 76.6% White (Extended Summary Figure). Pre/post-viewing the Hub, there was a statistically significant increase in hypospadias knowledge (54.3 vs. 75.6, p<0.001) and decrease in decisional conflict (36.0 vs. 21.9, p<0.001). Most participants (83.3%) thought Hub's length and amount of information (70.4%) was "about right", and 93.0% found most or everything was clear. Pre/post-consultation, there was a statistically significant decrease in decisional conflict (21.9 vs. 8.8, p<0.001). PrepDM's mean score was 82.6/100 (SD=14.1); SDM-Q-9's mean score was 82.5/100 (SD=16.7). DCS's mean score was 25.0/100 (SD=47.03). Each participant spent an average of 25.75min reviewing the Hub. Based on thematic analysis, the Hub helped participants feel prepared for the consultation. Participants engaged extensively with the Hub and demonstrated improved hypospadias knowledge and decision quality. They felt prepared for the consultation and perceived a high degree of involvement in decision-making. As the first pilot test of a pediatric urology DA, the Hub was acceptable and study procedures were feasible. We plan to conduct a randomized controlled trial of the Hub versus usual care to test its efficacy to improve the quality of shared decision-making and reduce long-term decisional regret.

Does ketorolac administration at the time of hypospadias surgery increase unplanned encounters in the immediate postoperative period?

The opioid crisis has raised concerns for long-term sequela of routine administration of opioids to patients, particularly in the pediatric population. Nonsteroidal anti-inflammatory drug use is limited in hypospadias surgery due to concerns for post-operative bleeding, particularly with ketorolac. We hypothesize that ketorolac administration at the time of hypospadias repair is not associated with increased bleeding or immediate adverse events. A retrospective single institution study included all patients undergoing hypospadias surgery from 2018 to 2021. Outcomes measured include peri-operative ketorolac administration, opioid prescriptions, and unplanned encounters (i.e., emergency department or office visits). Comparative statistics using non-parametric and binary/categorical tests and a logistic regression were performed. 1044 patients were included, among whom there were 562 distal, 278 proximal and 204 hypospadias complication repairs. Ketorolac was administered to 396 (37.9%) patients and its utilization increased during the study period [Summary Figure]. Patients receiving ketorolac were older (p=0.002) and were prescribed opioids less often after surgery (2.0% vs 5.2%, p=0.009). There was no difference in unplanned encounters across repair types (p=0.1). Multivariate logistic regression showed ketorolac use was not associated with an increased likelihood of an unplanned encounter. The use of NSAIDs post-operatively has traditionally been limited due to concerns about bleeding risks, however the present study displayed no significant increases in unplanned patient encounters either in the ED or outpatient clinic after ketorolac administration. Our study has several limitations including its retrospective and single-institutional design, difficulties of pain assessment in pediatric population, and possibility of under estimation of unplanned encounters due to limited access to patients' records outside of our institution. The use of ketorolac is not associated with an increase in unplanned encounters in children undergoing hypospadias repair. It should be considered a safe agent for perioperative analgesia to decrease opioid utilization. Further studies will evaluate long-term surgical outcomes in children receiving ketorolac after hypospadias repair.