Is it time to reconsider how we document pediatric uroflow studies?: A study from the SPU Voiding Dysfunction task force.

BACKGROUND: Uroflowmetry is a non-invasive study used in the diagnosis and monitoring of treatment response for lower urinary tract disorders. For optimal clinical utility, uroflow studies rely on careful clinical interpretation by a trained provider, but currently there is a lack of accepted standardized normal values for the measured uroflow parameters in children. The International Children's Continence Society proposed standardizing the terminology for uroflow curve shapes. However, the patterning of curves is largely at the physician's subjective discretion. OBJECTIVES: The aims of this study were to understand inter-rater reliability in interpreting uroflow curves and to define characteristics of uroflow curves that could be used to provide definitive criteria for uroflowmetry parameters. METHODS: All members of the SPU Voiding dysfunction Task Force were invited to contribute deidentified uroflows to a centralized HIPAA complaint receiving database. All studies were then distributed to all raters for review. Each observer's findings were recorded according to ICCS criteria (ICCS), additional readings were done using a previously reported system which defined curves as smooth or fractionated (SF) and whether the shape resembled a bell, tower, or plateau (BTP). Flow indexes (Qact/Qest) (FI) for Qmax and Qavg were generated using formulas previously reported for children 4-12 and for patients≥12 years. RESULTS: A total of 119 uroflow studies were read by 7 raters and curves were contributed from 5 sites. Kappa scores for the 5 readers from different institutions were 0.34 and 0.28 for the ICCS and BTP methods, respectively (both considered fair agreement). Kappa for smooth and fractionated curves was 0.70 (for each; considered substantial agreement), which were the two highest agreement scores obtained throughout the study. Discriminant analysis (DA) revealed that the FI Qmax was the dominant vector, and that the ICCS uroflow parameters have a total of 42.8% prediction rate in the training sample. Using DA of a smooth/fractionated system, the total prediction rates were 72% and 65.5% for smooth and fractionated, respectively. DISCUSSION: Given the poor inter-rater agreement for analyzing uroflow curve pattern based on ICCS criteria in this study and others, one may find it reasonable to consider alternative approaches to describing and characterizing uroflow curves. Our study is limited by lack of EMG and post-void residual data. CONCLUSIONS: For a more objective uroflow interpretation and comparison of studies among different centers, we recommend using our proposed system (based on FI, and smooth vs. fractionated curve pattern), which is more reliable.

Feasibility of establishing a multi-center research database using the electronic health record: The PURSUIT network.

BACKGROUND: Although multi-center research is needed in pediatric urology, collaboration is impeded by differences in physician documentation and research resources. Electronic health record (EHR) tools offer a promising avenue to overcome these barriers. OBJECTIVE: To assess the accuracy, completeness, and utilization of structured data elements across multiple practices. STUDY DESIGN: A standardized template was developed and implemented at five academic pediatric urology practices to document clinic visits for patients with congenital hydronephrosis and/or vesicoureteral reflux. Data from standardized elements in the template and from pre-existing EHR fields were extracted into a secure database. A 20% random sample of infants with data from structured elements from 1/1/2020 and 4/30/2021 were identified and compared to manual chart review at sites with >100 charts; all other sites reviewed at least 20 charts. Manual chart review was standardized across sites and included: clinic and operative notes, orders linked to the clinic encounter, radiology results, and active medications. Accuracy of data extraction was evaluated by computing the kappa statistic and percentage agreement. For sites that had adopted the templates prior to 6/1/2019 (early adopters), a list of eligible patients with an initial clinic visit from 1/1/2020-7/27/2020 was generated using standardized reporting techniques and confirmed by manual chart review. Physician utilization of the template was then calculated by comparing patients with data obtained from the note template to the generated list of eligible patients. RESULTS: 230 patient records met study criteria. Agreement between manual chart review and data extracted from the EHR was high (>85%). Race, ethnicity and insurance data were misclassified in about 10-15% of cases; this was due to site-specific differences in how these fields were coded. Renal ultrasound was misclassified 12% of the time; this was primarily due to outside images documented in radiology results but not included in the clinical note. All other data elements had >90% agreement (Figure). Template utilization for early adopters was >75% (75.5-87.5%). DISCUSSION: This is the first study in urology to demonstrate that use of structured data elements can support multi-center research. Limitations include: inclusion of only academic sites with the Epic EHR and lack of data on utilization and sustainability at sites without a prior history of structured template use. CONCLUSIONS: Multi-center research collaboration using EHR-based data collection tools is feasible with generally high accuracy compared to manual chart review. Additionally, sites with a long history of template adoption have high levels of provider utilization.

Repeated Low-Dose Acrolein Triggers Irreversible Lamina Propria Edema in Urinary Bladder, Transient Voiding Behavior and Widening of Eyes to Mechanical Stimuli.

Acrolein is a metabolite of cyclophosphamide (CYP), an alkylating agent used for a wide range of benign and malignant diseases. CYP treatments are known to trigger hemorrhagic cystitis in patients and animals. Significant effort has been made to prevent CYP/acrolein-induced cystitis, while still maintaining its therapeutic benefits. As a result, supplementary therapeutic options to mediate the protective role against CYP/acrolein and lower doses of CYP are currently given to targeted patients, as compared to past treatments. There is still a need to further study the effects of the repeated low-dose CYP/acrolein on the pathophysiology of the urinary bladder. In our study, a one-time treatment of acrolein and repeated low-dose acrolein triggered the thickening of the smooth muscle and lamina propria in the urinary bladder of C57BL/6J mice, respectively. The first dose of acrolein did not trigger voiding dysfunction, but the second dose triggered high-volume low-frequency voiding. Interestingly, our new scoring criteria and concurrent behavioral assessment revealed that mice with repeated low-dose acrolein had a wider opening of eyes in response to mechanical stimuli. Our study suggests that clinical symptoms among patients undergoing prolonged low-dose CYP may differ from previously reported symptoms of CYP-induced hemorrhagic cystitis.

Acute urinary retention in pediatric cerebral palsy: Is there an optimal management strategy?

INTRODUCTION AND OBJECTIVE: Cerebral palsy (CP) patients commonly have lower urinary tract dysfunction. Urinary retention (UR), which has been associated with dysfunctional voiding in CP can correlate to chronic upper tract dysfunction. We sought to provide insight into the pediatric presentation of acute UR in patients with CP and subsequent outcomes in this at-risk population. STUDY DESIGN: All children with perinatally acquired CP presenting to a regional health network were identified from 2009 to 2019. Retrospective analysis of a hospitalized subset concurrently diagnosed with a first episode of acute UR was performed. Factors associated with new-onset UR are described, as well as management. Using follow-up data, we also assessed the risk for recurrent UR and/or abnormal renal imaging after an initial UR presentation. RESULTS: 3404 CP patients were analyzed with only 33 fulfilling inclusion criteria. Median age was 10(IQR 7.5-16; range 1-22) years, 87.9% were GMFCS-V. 39.4% had a reported history of decreased urinary frequency. At presentation, median maximal time without void prior to catheterization was 13 h, and catheterized volume was a median 120% expected capacity-for-age. 84.8% of presentations were associated with a known transient/reversible etiology. 51.5% were post-anesthesia at median 3.5 days, 33.3% had associated constipation, 30.3% had received exacerbating medications. 11/33 were taught clean intermittent catheterization (CIC) after the initial presentation (all pro re nata [PRN] except one). At a median follow-up of 37 months: 50% of those without a CIC PRN no void plan had a repeat episode, at a median of 10.8 months later. Of the patients who had follow-up renal imaging at a median 22.0 months after presentation, 45% had abnormalities: 7 with debris or suspected stones and 2 with collecting system dilation. No factors associated with the initial UR presentation were found to be significantly predictive of recurrence or abnormal follow-up imaging. DISCUSSION: Patients with CP presenting with acute UR are often those with the most severe limitations and have a history of decreased urinary frequency. They usually have transient or reversible factors associated with UR presentation, however UR recurrence and abnormal imaging in this population subset is common. CONCLUSIONS: Pediatric patients with CP who present with acute UR usually present in the context of recent anesthesia and in the setting of exacerbating factors. They are at risk for recurrence and may be best managed with caretaker education of CIC PRN no void to address recurrent episodes. Providers should consider surveillance of these patients for the development of abnormal renal imaging.

Treatment of infants with ureteropelvic junction obstruction: findings from the PURSUIT network.

PURPOSE: Studies based on administrative databases show that infant pyeloplasty is associated with minority race/ethnicity but lack clinical data that may influence treatment. Our objective was to identify clinical and demographic factors associated with pyeloplasty in infants from three large tertiary centers. METHODS: We reviewed infants with unilateral Society for Fetal Urology (SFU) grade 3-4 hydronephrosis seen at three tertiary centers from 2/1/2018 to 9/30/2019. Patients were excluded if > 6 months old or treated surgically prior to the initial visit. Outcomes were: pyeloplasty < age 1 year and SFU grade on most recent ultrasound (US) within the first year. Covariables included: age at the initial visit, race/ethnicity, treating site, insurance type, febrile UTI, and initial imaging findings. Univariable and multivariable analyses were performed using log-rank tests and Cox proportional hazards models, respectively. RESULTS: 197 patients met study criteria; 19.3% underwent pyeloplasty. Pyeloplasty was associated with: treating site (p = 0.03), SFU 4 on initial US (p = 0.001), MAG-3 (p < 0.001), and T½ > 20 min (p < 0.001) in patients undergoing a MAG-3 (n = 107). MAG-3 (p < 0.001) and location (p = 0.08) were associated with earlier time to pyeloplasty on multivariable Cox analysis. In infants with follow-up US (n = 115), initial SFU grade, MAG-3 evaluation or findings, and pyeloplasty were not associated with improvement of hydronephrosis. CONCLUSIONS: We found that infant pyeloplasty rates vary between sites. Prolonged T½ was associated with surgery despite prior studies suggesting this is a poor predictor of worsening dilation or function. These findings suggest the need to standardize evaluation and indications for intervention in infants with suspected UPJ obstruction.

Variations in Adherence to American Urological Association Guidelines for Followup of Children with Vesicoureteral Reflux.

INTRODUCTION: Although the American Urological Association has established clinical guidelines for evaluation of vesicoureteral reflux in children, adoption of these guidelines has not been measured. The purpose of this study was to assess adherence to American Urological Association recommendations for annual followup in a multicenter cohort of children with vesicoureteral reflux. METHODS: We conducted a retrospective cohort study utilizing data in the Epic electronic health record across 3 pediatric urology practices. Patients were included if they had an initial clinic visit between January 1, 2010 and December 31, 2016, were under the age of 11 years and had a diagnosis of vesicoureteral reflux. Data regarding patient demographics, initial and 1-year followup evaluation with vital signs, urinalysis and ultrasound were captured. Kruskal-Wallis and chi-square analyses were used for univariable analyses. Logistic regression models were created for multivariable analyses. RESULTS: We identified 1,576 patients. Most patients were female (68%), Hispanic or nonwhite (52%) and treated with antibiotic prophylaxis (55.7%). Initial evaluation with vital signs and urinalysis varied significantly across sites (p <0.05). In patients who had a 1-year followup visit (974) followup vital signs and urinalysis varied by site (p <0.001). Followup ultrasound did not vary by site. Using multivariate analysis, followup measures were associated with location and measures obtained at initial evaluation (p <0.05). Additionally, followup ultrasound and urinalysis were more likely in children on antibiotic prophylaxis (p <0.05). CONCLUSIONS: We found significant variations in adherence to American Urological Association recommendations for annual followup of children with vesicoureteral reflux. Further work is needed to understand the impact of these variations on patient outcomes.

Evaluation and Long-term Management of Neurogenic Bladder in Spinal Dysraphism.

Spinal dysraphism, which includes conditions such as myelomeningocele and sacral agenesis, is one of the most common causes of congenital lower urinary tract dysfunction. Early evaluation of the neurogenic bladder serves to minimize renal damage, and the main goals of management include preserving renal function, achieving acceptable continence, and optimizing quality of life. The survival of patients with such conditions has improved to greater than 80% reaching adulthood, owing to advances in diagnostic and therapeutic modalities. The result is a real, and unfortunately often unmet, need for successful transitional care in this complex patient population. Clinicians must be able to identify the unique challenges encountered by patients with neurogenic bladder as they shift through different stages of their life.

Cost analysis of removing pediatric ureteral stents with and without a retrieval string.

BACKGROUND: Indwelling ureteral stents are commonly placed in urologic surgeries where optimal urinary drainage is necessary. In the pediatric population, removing a stent without retrieval string (SWOS) requires a secondary operation and additional anesthetic exposure. Although these burdens can be mitigated through the placement of a stent with retrieval string (SWS), fears of complications may prevent widespread adoption of this practice by pediatric urologists. OBJECTIVE: The authors sought to assess the differential cost of removing SWS and SWOS. It was hypothesized that costs associated with removing SWS are significantly lower than those associated with removing SWOS, without increasing complications. STUDY DESIGN: A retrospective chart review was performed on pediatric patients undergoing common urologic surgeries with concurrent stent placement at a single tertiary referral center. Charges and healthcare costs surrounding the removal of ureteral stents were evaluated using the institution-specific ratio of cost to charges, by estimating lost wages, and by exploring differences in poststent healthcare-related events that incur additional cost. RESULTS: A total of 109 patients with a median age of 5 years (range: 6 months-20 years) were reviewed. A total of 29 patients had SWS, and 80 had SWOS. The theoretical cost of SWS removal in clinic was $400.48 compared with $2290.86 ± $119.30 for operative removal of SWOS, with mean difference of $1890.38 (P < 0.01). The mean stent duration of SWOS was 34.0 ± 13.2 days vs. 10.1 ± 4.9 days for SWS (P < 0.01). Subgroup analysis of the ureteral reconstruction group showed no difference in any complications (35% vs 27%, respectively), early dislodgment (7% vs 7%, respectively) or costly healthcare utilization (23% vs 20%, respectively) among patients with SWOS compared with those with SWS. In SWS group with early dislodgment, neither required a secondary procedure. DISCUSSION: With rising healthcare expenditures, physicians must be able to provide cost-effective treatment while not compromising safety or outcomes. Unlike prior analyses of cost related to the type of the stent used, the present study specifically reviewed costs of removing SWS versus SWOS and evaluated rates of costly complications. The study findings provide a preliminary basis for advocating the more economical use of SWS when indicated. Lack of power and heterogeneity of the groups need to be addressed in future analyses with larger, matched cohorts. CONCLUSION: Removal of SWS is more cost-effective than that of SWOS while maintaining similar safety outcomes and should be considered in certain pediatric urology cases to decrease healthcare cost. SWS should be preferred for uncomplicated ureteroscopy, but benefits are less certain in ureteral reconstruction; further studies are needed.

Providing Access: Differences in Pediatric Portal Activation Begin at Patient Check-in.

BACKGROUND: The patient portal interface with individual electronic health records (EHR) was introduced as a tool to enhance participatory medicine. Recent studies suggest adults from racial and ethnic minorities as well as non-English speakers face disproportionate barriers to adoption; however, little data are available for pediatric patients. OBJECTIVE: The purpose of this study was to examine patient portal offers and activation patterns among pediatric urology patients at two geographically diverse tertiary pediatric hospitals. METHODS: Retrospective analysis of 2011 to 2016 electronic portal audit records was conducted among patients aged 18 and younger with at least one outpatient urology clinic visit at two tertiary academic pediatric hospitals and their affiliated networks. Differences in utilization among parents/caregivers and adolescents were examined using multivariate analysis. RESULTS: Of 44,608 individuals seen in a participating urology department during the study period, 21,815 (48.9%) were offered a code for patient portal activation; of these, 8,605 (19.3% of total eligible individuals) activated portal access. Logistic regression demonstrated associations between an offer and site (p < 0.001), being female (p < 0.001), being Asian or white (p < 0.05), being non-Hispanic (p < 0.001), and reporting English as preferred language (p < 0.001). Activating patient portal access was associated with site (p < 0.001), being Asian or white (p < 0.001), and reporting English as preferred language (p < 0.001). CONCLUSION: This study found that demographic variations in portal began with demographic differences in which patients were offered an activation code. Fewer than half of those given an access code activated their account. Preferred language, race/ethnicity, and clinic location were associated with likelihood of portal activation. Although patients are increasingly expected to schedule appointments, manage correspondence, request prescription refills, obtain authorizations and referrals, and communicate with the medical team using the portal, this study suggests that in the pediatric specialty setting many patients and caregivers are not offered the opportunity to access these tools.

Vesicostomy button: how is it placed, in whom, and how is quality of life affected?

ABSTRACT Purpose The vesicostomy button has been shown to be a safe and effective bladder management strategy for short- or medium-term use when CIC cannot be instituted. This study reports our use with the vesicostomy button, highlighting the pros and cons of its use and complications. We then compared the quality or life in patients with vesicostomy button to those performing clean intermittent catheterization. Materials and Methods Retrospective chart review was conducted on children who had a vesicostomy button placed between 2011 and 2015. Placement was through existing vesicostomy, open or endoscopically. We then evaluated placement procedure and complications. A validated quality of life questionnaire was given to patients with vesicostomy button and to a matched cohort of patients performing clean intermittent catheterization. Results Thirteen children have had a vesicostomy button placed at our institution in the 4 year period, ages 7 months to 18 years. Indications for placement included neurogenic bladder (5), non-neurogenic neurogenic bladder (3), and valve bladders (5). Five out of 7 placed via existing vesicostomy had leakage around button. None of the endoscopically placed buttons had leakage. Complications were minor including UTI (3), wound infection (1), and button malfunction/leakage (3). QOL was equal and preserved in patients living with vesicostomy buttons when compared to CIC. Conclusion The vesicostomy button is an acceptable alternative to traditional vesicostomy and CIC. The morbidity of the button is quite low. Endoscopic insertion is the optimal technique. QOL is equivalent in patients with vesicostomy button and those who perform CIC.

Vesicostomy button: how is it placed, in whom, and how is quality of life affected?

PURPOSE: The vesicostomy button has been shown to be a safe and effective bladder management strategy for short- or medium-term use when CIC cannot be instituted. This study reports our use with the vesicostomy button, highlighting the pros and cons of its use and complications. We then compared the quality or life in patients with vesicostomy button to those performing clean intermittent catheterization. MATERIALS AND METHODS: Retrospective chart review was conducted on children who had a vesicostomy button placed between 2011 and 2015. Placement was through existing vesicostomy, open or endoscopically. We then evaluated placement procedure and complications. A validated quality of life questionnaire was given to patients with vesicostomy button and to a matched cohort of patients performing clean intermittent catheterization. RESULTS: Thirteen children have had a vesicostomy button placed at our institution in the 4 year period, ages 7 months to 18 years. Indications for placement included neurogenic bladder (5), non-neurogenic neurogenic bladder (3), and valve bladders (5). Five out of 7 placed via existing vesicostomy had leakage around button. None of the endoscopically placed buttons had leakage. Complications were minor including UTI (3), wound infection (1), and button malfunction/leakage (3). QOL was equal and preserved in patients living with vesicostomy buttons when compared to CIC. CONCLUSION: The vesicostomy button is an acceptable alternative to traditional vesicostomy and CIC. The morbidity of the button is quite low. Endoscopic insertion is the optimal technique. QOL is equivalent in patients with vesicostomy button and those who perform CIC.

Reducing Opioid Prescriptions in Outpatient Pediatric Urological Surgery.

PURPOSE: We assessed the impact of a 2-phase Plan-Do-Study-Act cycle to decrease opioid prescriptions following pediatric urological surgery. MATERIALS AND METHODS: Parents of children undergoing outpatient urological procedures were given questionnaires to assess opioid dosing and pain scores using the Parents' Postoperative Pain Measure scale. Age, procedure and opioid prescription data were recorded, as well as volume of medication administered. During the first phase of data collection children received an opioid prescription for 10 doses. In the second phase opioid prescriptions were reduced by 50%. Nonparametric tests and Fisher exact test were used for analysis. RESULTS: Of 250 eligible children 98 (39%) with a median age of 3.0 years (IQR 7.0) participated. In the 81 patients prescribed opioids a median of 2 doses (IQR 3.6) were used in the preintervention and postintervention groups (p = 0.68). Using nonparametric statistical testing, no significant differences were found between pain scores in the 5-dose group (31 patients) and the 10-dose group (24 patients; p = 0.05 for day 1, p = 0.07 for day 2, p = 0.06 for day 3). There was no association between age and percent opioid used (p = 0.83). There were no significant differences in median pain scores or median doses among procedure types. CONCLUSIONS: In outpatient pediatric surgical practice opioid prescriptions can be decreased without increasing pain scores. Physician prescribing practices may contribute more to opioid consumption than actual pain patterns.

Reflux Timing Is a Predictor of Successful Endoscopic Treatment of Vesicoureteral Reflux.

OBJECTIVE: To determine whether vesicoureteral reflux (VUR) that occurs during either the filling or voiding phase on voiding cystourethrogram (VCUG) has prognostic significance on successful endoscopic treatment. MATERIALS AND METHODS: A retrospective review was performed of 299 patients (438 ureters) with VUR who underwent endoscopic treatment with dextranomer/hyaluronic acid copolymer (Deflux) at a single institution from 2010 to 2013. Success was defined as absence of VUR on 3-month follow-up VCUG. Preoperative VCUGs were analyzed to determine whether the onset of VUR occurred during the filling or voiding phase. Predictor variables to determine success were analyzed, with a specific focus on VUR timing. RESULTS: Success rate was 319/438 (72.8%) by ureter and 202/299 (67.6%) by patient. Reflux was seen during the filling and voiding phases in 290 and 148 ureters, respectively. Success rate was 203/290 (78%) for filling VUR and 116/148 (70%) for voiding VUR. Univariable analysis revealed voiding VUR had significantly increased odds of success (odds ratio [OR] 3.2, P = .049), while high-grade reflux (OR 0.53, P = .005) had significantly decreased odds of success. Multivariable analysis showed that voiding VUR (OR 3.2, P = .005) had significantly higher odds of success while those with high grade reflux (OR 0.42, P = .017) had significantly decreased odds of success. CONCLUSION: The timing of VUR on preoperative VCUG appears to be an important independent predictor of successful endoscopic treatment of VUR. This has important clinical considerations when selecting VUR patients who would be best candidates for endoscopic treatment.

Patient Portal Usage in Pediatric Urology: Is it Meaningful Use for Everyone?

INTRODUCTION: The Affordable Care Act promotes multiple directives for meaningful use of the Electronic Health Record, such as patient/provider portals, to increase patient engagement. Although portal use is common within adult healthcare, little information exists regarding pediatric portal use. We examined pediatric urology patient portal enrollment and activation patterns at a tertiary pediatric hospital in Southern California by race/ethnicity, preferred language, gender, and residential region. METHODS: Retrospective Electronic Health Record analysis of enrollment in patient portal from January 2010 to May 2016 among 10,464 patients with at least one outpatient urology clinic visit. Differences in adoption rates were examined using logistic regression for the following categories: activated (or caregiver activated); code accepted not activated; declined; or activated/then deactivated. RESULTS: Overall, 46.5% of patients/caregivers activated the portal. Primarily Spanish-speaking patients were less likely to activate (OR 0.25, p <.001) than English-speaking patients. Males (OR 0.89, p =.004); those self-identifying racially as Other (not White, Asian, or African American) (OR 0.47, p <.001); and Hispanic patients (OR 0.49, p <.001) were less likely to activate. Suburban patients were up to 3 times more likely to activate portals than central urban patients depending on the region (OR 2.94, p <.001). Multivariate logistic regression demonstrated Spanish-speaking patients were 3 times less likely to activate while controlling for demographic and region variables. CONCLUSIONS: Primary language and socioeconomic factors may be significant barriers to portal adoption. Patient education to reduce these barriers may increase portal acceptance and increase meaningfulness to the portal for patients/parents and providers.

Long-term Management of Ureterocele in Duplex Collecting Systems: Reconstruction Implications.

PURPOSE OF REVIEW: Significant variance exists in the management of duplex collecting system ureteroceles (DSU). There is a great spectrum in classification, management, and surgical interventions. The practice of performing bladder level operations for vesicoureteral reflux (VUR) and trigonal anatomic distortion, either after ureterocele puncture or in a single setting, has come into question as to whether all DSU patients require it. In this review, we sought to discuss DSU management trends and the need for bladder reconstruction in these patients, as well as to describe our institution's practices. RECENT FINDINGS: Recent advances regarding DSU management revolve around differing surgical approaches, although adequately powered randomized control trials are lacking. These approaches include nonoperative management, various forms of endoscopic puncture, ureteroureterostomy, and most recently upper pole ureteral ligation. A common theme appears to reflect the acceptance that "less is more" when it comes to managing DSU. There is no consensus for the decision to treat or the surgical approach of DSU. Ureteral reimplantation and bladder neck reconstruction appears to be unnecessary in a significant portion of the DSU population, but ureterocele treatment needs to be individualized. There is an ongoing need for large, multi-institutional randomized control trials to evaluate this further.

Extracting autism spectrum disorder data from the electronic health record.

BACKGROUND: Little is known about the health care utilization patterns of individuals with pediatric autism spectrum disorder (ASD). OBJECTIVES: Electronic health record (EHR) data provide an opportunity to study medical utilization and track outcomes among children with ASD.  Methods: Using a pediatric, tertiary, academic hospital's Epic EHR, search queries were built to identify individuals aged 2-18 with International Classification of Diseases, Ninth Revision (ICD-9) codes, 299.00, 299.10, and 299.80 in their records. Codes were entered in the EHR using four different workflows: (1) during an ambulatory visit, (2) abstracted by Health Information Management (HIM) for an encounter, (3) recorded on the patient problem list, or (4) added as a chief complaint during an Emergency Department visit. Once individuals were identified, demographics, scheduling, procedures, and prescribed medications were extracted for all patient-related encounters for the period October 2010 through September 2012. RESULTS: There were 100,000 encounters for more than 4,800 unique individuals. Individuals were most frequently identified with an HIM abstracted code (82.6%) and least likely to be identified by a chief complaint (45.8%). Categorical frequency for reported race (2 = 816.5, p < 0.001); payor type (2 = 354.1, p < 0.001); encounter type (2 = 1497.0, p < 0.001); and department (2 = 3722.8, p < 0.001) differed by search query. Challenges encountered included, locating available discrete data elements and missing data. CONCLUSIONS: This study identifies challenges inherent in designing inclusive algorithms for identifying individuals with ASD and demonstrates the utility of employing multiple extractions to improve the completeness and quality of EHR data when conducting research.

Evaluation and Lifetime Management of the Urinary Tract in Patients with Myelomeningocele.

In the United States, there are an estimated 25,000 children ages 0 to 19 years and about 166,000 of all ages currently affected by spina bifida. Management is multimodal and can be complex. Management techniques vary throughout a child's lifetime, but the goals remain the same: prevention of urinary tract infections and establishing acceptable continence. Continence is addressed as the child reaches school age. Additional considerations such as development of urolithiasis and the associated burden are highlighted in adolescence and into adulthood. These complex medical needs become more challenging as patients age and need to transition to adult providers.

Structured Data Entry in the Electronic Medical Record: Perspectives of Pediatric Specialty Physicians and Surgeons.

The Epic electronic health record (EHR) platform supports structured data entry systems (SDES), which allow developers, with input from users, to create highly customized patient-record templates in order to maximize data completeness and to standardize structure. There are many potential advantages of using discrete data fields in the EHR to capture data for secondary analysis and epidemiological research, but direct data acquisition from clinicians remains one of the largest obstacles to leveraging the EHR for secondary use. Physician resistance to SDES is multifactorial. A 35-item questionnaire based on Unified Theory of Acceptance and Use of Technology, was used to measure attitudes, facilitation, and potential incentives for adopting SDES for clinical documentation among 25 pediatric specialty physicians and surgeons. Statistical analysis included chi-square for categorical data as well as independent sample t-tests and analysis of variance for continuous variables. Mean scores of the nine constructs demonstrated primarily positive physician attitudes toward SDES, while the surgeons were neutral. Those under 40 were more likely to respond that facilitating conditions for structured entry existed as compared to the two older age groups (p = .02). Pediatric surgeons were significantly less positive than specialty physicians about SDES effects on Performance (p = .01) and the effect of Social Influence (p = .02); but in more agreement that use of forms was voluntary (p = .02). Attitudinal differences likely reflect medical training, clinical practice workflows, and division specific practices. Identified resistance indicate efforts to increase SDES adoption should be discipline-targeted rather than a uniform approach.

Physician Perception of the Role of the Patient Portal in Pediatric Health.

The patient portal, increasingly available to patients, allows secure electronic communication with physicians. Although physician attitude toward the portal plays a crucial role in patient adoption, little information regarding physician opinion of the portal is available, with almost no information gathered in the pediatric environment. Using a mixed-methods approach, physicians in a large pediatric medical facility and integrated delivery network were surveyed using an online quantitative questionnaire and structured interviews. Physicians reported the portal's role in more communication efficiency for patients, parents, and providers. The portal's acceptance also introduces new challenges such as frequent questions from some parents and medical visit avoidance.