Bilateral Wilms tumor with anaplasia: A report from the Children's Oncology Group Study AREN0534.

INTRODUCTION: The purpose of this study is to examine the outcomes in children with anaplastic bilateral Wilms tumor (BWT) from study AREN0534 in order to define potential prognostic factors and areas to target in future clinical trials. METHODS: Demographic and clinical data from AREN0534 study patients with anaplasia (focal anaplasia [FA], or diffuse anaplasia [DA]) were compared. Event-free survival (EFS) and overall survival (OS) were reported using Kaplan-Meier estimation with 95% confidence bands, and differences in outcomes between FA and DA compared using log-rank tests. The impact of margin status was analyzed. RESULTS: Twenty-seven children who enrolled on AREN0534 had evidence of anaplasia (17 DA, 10 FA) in at least one kidney and were included in this analysis. Twenty-six (96%) had BWT. Nineteen percent had anaplastic histology in both kidneys (four of 17 DA, and one of 10 FA). Forty-six percent with BWT had bilateral nephron-sparing surgery (NSS); one child who went off protocol therapy, eventually required bilateral completion nephrectomies. Median follow-up for EFS and OS was 8.6 and 8.7 years from enrollment. Four- and 8-year EFS was 53% [95% confidence interval (CI): 34%-83%] for DA; 4-year EFS was 80% [95% CI: 59%-100%], and 8-year EFS 70% [95% CI: 47%-100%] for FA. Three out of 10 children with FA and eight out of 17 children with DA had events. EFS did not differ statistically by margin status (p = .79; HR = 0.88). Among the six children who died (five DA, one FA), all experienced prior relapse or progression within 18 months. CONCLUSION: Events in children with DA/FA in the setting of BWT occurred early. Caution should be taken about interpreting the impact of margin status outcomes in the context of contemporary multimodal therapy. Future targeted investigations in children with BWT and DA/FA are needed.

Prognostic impact of lymph node involvement and loss of heterozygosity of 1p or 16q in stage III favorable histology Wilms tumor: A report from Children's Oncology Group Studies AREN03B2 and AREN0532.

INTRODUCTION: The prognostic impact of positive lymph nodes (LN+) and/or singular loss of heterozygosity (LOH) of 1p or 16q were assessed in children with stage III favorable histology Wilms tumor (FHWT) enrolled on AREN0532 or AREN03B2 alone. PATIENTS AND METHODS: A total of 635 stage III FHWT vincristine/dactinomycin/doxorubicin (DD4A)-treated patients met inclusion criteria. Event-free survival (EFS) and overall survival are reported overall and by LN sampling, LN status, LOH 1p, LOH 16q, and a combination of LN status and singular LOH. Patients with unknown or positive combined LOH of 1p and 16q status and AREN03B2-only patients with unknown outcomes or treatment other than DD4A were excluded. RESULTS: EFS did not differ by study, supporting pooling. Lack of LN sampling (hazard ratio [HR], 2.12; p = .0037), LN positivity (HR, 2.78; p = .0002), LOH 1p (HR, 2.18; p = .0067), and LOH 16q (HR, 1.72; p = .042) were associated with worse EFS. Compared with patients with both LN- and LOH-, those with negative nodes but positive LOH 1p or 16q and those with LN+ but LOH- for 1p or 16q had significantly worse EFS (HR, 3.05 and 3.57, respectively). Patients positive for both LN and LOH had the worst EFS (HR, 6.33; overall group factor, p < .0001). CONCLUSION: Findings confirm LN+ status as an adverse prognostic factor amplified by presence of singular LOH 1p or 16q, supporting study of intensified therapy for patients with LN+ in combination with singular LOH in a prospective clinical trial.

Management and Outcomes of Wilms Tumor With Suprarenal Intravascular Extension: A Pediatric Surgical Oncology Research Collaborative Study.

OBJECTIVE: The purpose of this study was to describe management and outcomes from a contemporary cohort of children with Wilms tumor complicated by inferior vena caval thrombus. BACKGROUND: The largest series of these patients was published almost 2 decades ago. Since then, neoadjuvant chemotherapy has been commonly used to manage these patients, and outcomes have not been reported. METHODS: Retrospective review of 19 North American centers between 2009 and 2019. Patient and disease characteristics, management, and outcomes were investigated and analyzed. RESULTS: Of 124 patients, 81% had favorable histology (FH), and 52% were stage IV. IVC thrombus level was infrahepatic in 53 (43%), intrahepatic in 32 (26%), suprahepatic in 14 (11%), and cardiac in 24 (19%). Neoadjuvant chemotherapy using a 3-drug regimen was administered in 82% and postresection radiation in 90%. Thrombus level regression was 45% overall, with suprahepatic level showing the best response (62%). Cardiopulmonary bypass (CPB) was potentially avoided in 67%. The perioperative complication rate was significantly lower after neoadjuvant chemotherapy [(25%) vs upfront surgery (55%); P =0.005]. CPB was not associated with higher complications [CPB (50%) vs no CPB (27%); P =0.08]. Two-year event-free survival was 93% and overall survival was 96%, higher in FH cases (FH 98% vs unfavorable histology/anaplastic 82%; P =0.73). Neither incomplete resection nor viable thrombus cells affected event-free survival or overall survival. CONCLUSIONS: Multimodal therapy resulted in excellent outcomes, even with advanced-stage disease and cardiac extension. Neoadjuvant chemotherapy decreased the need for CPB to facilitate resection. Complete thrombectomy may not always be necessary.

MR Imaging of Pediatric Neuroblastoma: Is Gadolinium Enhancement Necessary for Evaluation of Image-Defined-Risk Factors?

Background: Pre-treatment stratification and outcomes of neuroblastoma patients often depend on the assessment of image-defined risk factors (IDRFs) on MR Imaging, usually using Gadolinium-contrast materials which are cautioned in pediatrics. We aimed to address whether gadolinium contrast-enhanced sequences are necessary to identify the presence/absence of IDRFs. Methods: Patients with neuroblastoma with MR imaging were retrospectively identified from 2005 to 2021. Ninety confirmed IDRFs were evaluated in 23 patients. Corresponding MR studies were anonymized, randomized, and independently evaluated by 3 fellowship-trained pediatric radiologists. Each radiologist assessed the studies twice. At the first reading, all enhanced sequences were omitted, while in the second reading, the full study with enhanced sequences were included. Consensus reading was obtained among readers. Inter- and intra-rater agreements using Kappa statistics (κ) as well as the sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV), and accuracy of non-enhanced MR in assessing IDRFs with respect to enhanced MR were calculated. Results: There were substantial (ĸ: 0.64-0.73) intra-reader agreements, and moderate to substantial (ĸ: 0.57-0.62) inter-reader agreements among radiologists in identifying IDRFs using non-enhanced MR. Non-enhanced MR had a sensitivity of 87.8% (95% CI [79-94]), specificity of 93% (89-96), PPV of 82.3 (73-89), NPV of 95.4 (92-98), and accuracy of 91.6 (88-94) in identifying IDRFs. However, 5/23 patients (21.7%) had a change in staging with the inclusion of contrast sequences. Conclusion: Although contrast sequences have a role in IDRF assessment, the majority can be adequately assessed on MR without gadolinium-contrast enhancement. Validation in a larger cohort is an important next step.

Critical elements of radical nephroureterectomy for pediatric unilateral renal tumor.

Children with renal masses require surgical management to provide accurate surgical staging and skilled resection of the tumor. This document includes evidence-based recommendations for pediatric surgeons regarding the resection, staging, and proper nodal basin evaluation.

Wilms Tumor.

Wilms tumor (WT), or nephroblastoma, is the most common primary malignant renal tumor of childhood. It is an embryonal tumor that develops from remnants of immature kidney. There are approximately 500 new WT cases diagnosed in the United States every year. Advances in multimodal therapy including surgery, chemotherapy, and radiation therapy given according to risk stratification have allowed most patients to achieve survival rates in excess of 90%.

Diagnosis, Classification, and Contemporary Management of Undescended Testicles.

This article provides a comprehensive review regarding undescended testicles and other related conditions. We have included background information summarizing variable clinical presentations, epidemiology, and the implications of undescended testis (UDT) on fertility and malignancy risk. This article has an emphasis on the approach to diagnosis and surgical management for the UDT. The purpose of this review is to provide readers with useful clinical tools for assessing and treating patients with cryptorchidism.

Development and implementation of a postgraduate medical education-wide initiative in quality improvement and patient safety.

BACKGROUND: Quality improvement and patient safety (QIPS) have been assigned a higher profile in CanMEDS 2015, CanMEDS-Family Medicine 2017 and new accreditation standards, prompting an initiative at Dalhousie University to create a vision for integrating QIPS into postgraduate medical education. OBJECTIVE: The purpose of this study is to describe the implementation of a QIPS strategy across residency education at Dalhousie University. METHODS: A QIPS task force was formed, and a literature review and needs assessment survey were completed. A needs assessment survey was distributed to all Dalhousie residency programme directors. 12 programme directors were interviewed individually to collect additional feedback. The results were used to develop a 'road map' of recommendations with a graduated timeline. RESULTS: A task force report was released in February 2018. 46 recommendations were developed with a timeframe and responsible party identified for each. Implementation of the QIPS strategy is underway, and evaluation and challenges faced will be described. CONCLUSIONS: We have developed a multiyear strategy that is available to provide guidance and support to all programmes in QIPS. The development and implementation of this QIPS framework may serve as a template for other institutions who seek to integrate these competencies into residency training.

Survival effect of complete surgical resection of the primary tumor in patients with metastatic, high-risk neuroblastoma in a large Canadian cohort.

PURPOSE: To determine whether extent of surgical resection of the primary tumor correlates with survival in patients with International Neuroblastoma Staging System (INSS) stage 4, high-risk neuroblastoma. METHODS: Data were extracted for patients with newly diagnosed INSS stage 4, high-risk neuroblastoma between 2001 and 2019 from the national Cancer in Young People in Canada (CYPC) database. Complete resection was defined as gross total resection of primary tumor based on operative reports. Primary endpoints were 3 and 5-year event-free (EFS) and overall survival (OS). Survival analyses were completed using log-rank test and Cox proportional hazards regression including covariates of age, sex, decade of treatment (2001-2009 vs. 2010-2019), immunotherapy, and tandem stem cell transplant (SCT). RESULTS: One-hundred and forty patients with complete surgical data were included. On univariate analysis, 3-year EFS and OS for patients that had complete versus incomplete resection was 71% (95% CI 57-80%) vs. 48% (36-60%) and 86% (75-93%) vs. 64% (51-74%), p = .008 and p = .002, respectively. 5-year EFS and OS for patients with complete resection also demonstrated significantly improved survival. On Cox Proportional Hazards models adjusted for age, immunotherapy, tandem SCT, and surgical resection, only complete resection was associated with statistically significant improved 3 year EFS and OS, HR = 0.48 (0.29-0.81; p = .006) and HR = 0.42 (0.24-0.73; p = .002). CONCLUSIONS: In a large Canadian INSS stage 4 high-risk neuroblastoma cohort, complete surgical resection was associated with increased EFS and OS. Within the constraints of a retrospective study, these results suggest that the ability to achieve primary tumor complete resection in patients with metastatic high-risk disease is associated with improved survival.

Outcomes according to treatment using an established protocol in patients with bilateral Wilms' tumor: A national Canadian population-based study.

BACKGROUND: Bilateral Wilms tumor (BWT) is a rare entity. The goal of this study is to report outcomes (overall and event-free survival, OS/EFS) of BWT in a large cohort representative of the Canadian population since 2000. We focused on the occurrence of late events (relapse or death beyond 18 months), as well as outcomes of patients treated following the only protocol specifically designed for BWT to date, AREN0534, compared to patients treated following other therapeutic schemes. METHODS: Data was obtained for patients diagnosed with BWT between 2001 and 2018 from the Cancer in Young People in Canada (CYP-C) database. Demographics, treatment protocols, and dates for events were collected. Specifically, we examined outcomes of patients treated according to the Children's Oncology Group (COG) protocol AREN0534 since 2009. Survival analysis was performed. RESULTS: 57/816 (7%) of patients with Wilms tumor had BWT during the study period. Median age at diagnosis was 2.74 years (IQR 1.37-4.48) and 35 (64%) were female; 8/57 (15%) had metastatic disease. After a median follow-up of 4.8 years (IQR 2.8-5.7 years, range 0.2-18 years), OS and EFS were 86% (CI 73-93%) and 80% (CI 66-89%), respectively. Less than 5 events were recorded after 18 months from diagnosis. Since 2009, patients treated according to the AREN0534 protocol had a statistically significant higher OS compared to patients treated with other protocols. CONCLUSIONS: In this large Canadian cohort of patients with BWT, OS and EFS compared favorably to the published literature. Late events were rare. Patients treated according to a disease-specific protocol (AREN0534) had improved overall survival. TYPE OF STUDY: Original article. LEVEL OF EVIDENCE: Level IV.

Technical advances in the surgical management of Wilms tumors in children.

Surgery is one of the cornerstones of Wilms tumor treatment. In this article, we present technical advancements that are finding their way into the armamentarium of pediatric cancer surgeons. We discuss the current approaches, challenges, opportunities, and future directions of minimally invasive surgery (laparoscopic and robotics), image-guided surgery, and fluorescence-guided surgery. Furthermore, we discuss the use of intraoperative ultrasonography, as well as the use of new techniques to improve the quality of lymph node sampling.

Treatment and Outcomes of Congenital Ovarian Cysts A Study by the Canadian Consortium for Research in Pediatric Surgery (CanCORPS).

OBJECTIVE: We conducted a multicenter study to assess treatments and outcomes in a national cohort of infants with congenital ovarian cysts. SUMMARY BACKGROUND DATA: Wide variability exists in the treatment of congenital ovarian cysts. The effects of various treatment strategies on outcomes, specifically ovarian preservation, are not known. METHODS: Female infants diagnosed with congenital intra-abdominal cysts between 2013 and 2017 at 10 Canadian pediatric surgical centers were retrospectively evaluated. Sonographic characteristics, median time to cyst resolution, incidence of ovarian preservation, and predictors of surgery were evaluated. Subgroup analyses were performed in patients with complex cysts and cysts ≥40 mm in diameter. RESULTS: The study population included 189 neonates. Median gestational age at diagnosis and median maximal prenatal cyst diameter were 33 weeks and 40 mm, respectively. Cysts resolved spontaneously in 117 patients (62%), 14 (7%) prenatally, and the remainder at a median age of 124 days. Intervention occurred in 61 patients (32%), including prenatal aspiration (2, 3%), ovary sparing resection (14, 23%), or oophorectomy (45, 74%). Surgery occurred at a median age of 7.4weeks. Independent predictors of surgery included postnatal cyst diameter ≥40 mm [odds ratio (OR) 6.19, 95% confidence interval (CI) 1.66-35.9] and sonographic complex cyst character (OR 63.6, 95% CI 10.9-1232). There was no significant difference in the odds of ovarian preservation (OR 3.06, 95% CI 0.86 -13.2) between patients who underwent early surgery (n = 22) and those initially observed for at least 3 months (n = 131). CONCLUSIONS: Most congenital ovarian cysts are asymptomatic and spontaneously resolve. Early surgical intervention does not increase ovarian preservation.

Geospatial analysis of hypospadias and cryptorchidism prevalence rates based on postal code in a Canadian province with stable population.

INTRODUCTION: Hypospadias and cryptorchidism are hormone-mediated malformations that occur during male development. Prevalence rates of hypospadias and cryptorchidism are thought to be increasing worldwide. In-utero exposure to endocrine-disrupting chemicals (EDCs) may have a role in the occurrence of these malformations. Our group has reported significant clustering of hypospadias and cryptorchidism at the county level in areas of intense agricultural activity in the Canadian province of Nova Scotia (NS). Finer scale spatial analysis has shown clustering near urban centres. OBJECTIVES: The objectives of the study were: 1) to perform a granular geospatial analysis of hypospadias and cryptorchidism prevalence, at the postal code level, of all babies born in NS over a 26-year period; and 2) to determine whether there is spatial correlation between these conditions and industries linked to toxic output. STUDY DESIGN: Cases of hypospadias and cryptorchidism were identified based on ICD-10 codes from the Nova Scotia Atlee Perinatal Database with records of all live births in NS between 1988 and 2013. Data were geocoded and mapped based on the three first digits of the maternal postal code (Forward Sortation Area [FSA]). Regional prevalence of congenital anomalies was calculated for each of the 77 FSAs. To identify statistically significant high and low prevalence clusters for each anomaly, Local Morans I was used on the spatial data. Geospatial point data was created for industries linked to toxic output and correlation between clusters of malformations and proximity to these industries was assessed. RESULTS: During the study period, there were 1045 cases of hypospadias and 993 cases of cryptorchidism. Both hypospadias and cryptorchidism demonstrated statistically significant areas of high prevalence clusters. There was no significant spatial correlation between the local clustering of the congenital malformations and proximity to toxic industries. DISCUSSION AND CONCLUSION: Our study shows heterogeneity in the distribution of hypospadias and cryptorchidism, which is consistent with previously published works. In this follow-up, granular geospatial analysis of hypospadias and cryptorchidism prevalence in an area with stable population, we did not confirm the previous findings of high clustering in areas of intense agricultural activity. Furthermore, our analysis did not find high clustering of the congenital malformations in areas near toxic industries to support a clear environmental role in their development. Some of the limitations include underdiagnosis of hypospadias and cryptorchidism (as they both present with a clinical spectrum and are non-life threatening), and limited data currently available on the route of exposure to EDC industries in Nova Scotia.

Incidence of fertility preservation procedures in prepubertal individuals with cancer.

BACKGROUND: Fertility Preservation (FP) for children and adolescents with cancer is underutilized. In prepubertal individuals, ovarian and testicular tissue can be frozen; however, this is still considered largely experimental. Our objective was to identify trends of FP in prepubertal individuals. METHODS: We performed a retrospective study of prepubertal children with cancer identified through the Pediatric Health Information System from 2011 to 2020. Children who underwent a testicular or ovarian biopsy were included. Any patients with testicular or ovarian malignancy, or other diagnoses which may have required a gonadal biopsy were excluded. RESULTS: A total of 418 boys under 13 and 333 girls under 12 who underwent a gonadal biopsy were identified. There was a total of 66,929 new cancer diagnoses in girls and 86,001 new cancer diagnoses in boys during this time. The most common cancer diagnosis was hematologic in both boys (50.96%) and girls (36.64%). A concurrent procedure at time of gonadal biopsy was performed in 84% of boys and 62% of girls, with line insertion being the most common. The only predictive variable of receiving a gonadal biopsy was increasing year. Overall, only 0.04% of children had a gonadal biopsy for FP during this time period. CONCLUSIONS: Gonadal biopsy rates have increased in prepubertal children with cancer, presumably for FP. While recent international guidelines support FP in this group, our findings highlight the need to establish protocols and tracking for FP procedures in the US.

The Canadian Consortium for Research in Pediatric Surgery: Roadmap for Creation and Implementation of a National Subspecialty Research Consortium.

Clinical practice should be driven by high-quality research that produces evidence to inform best practices. Generation of such evidence is often challenging, particularly for smaller specialties, such as pediatric surgery, that treat many patients with rare diseases. Multi-institutional collaboration is seen as a major strategy to address these challenges. We have recently created the Canadian Consortium for Research in Pediatric Surgery, a national consortium that includes all major pediatric surgical services across Canada. The mission of the Consortium is to improve pediatric surgical care through high-quality collaborative research. In this article, we describe the rationale and methodology for creation of the Canadian Consortium for Research in Pediatric Surgery, demonstrate its achievements to date, and share a number of foundational concepts that are integral to its success. Our aim is to provide a model for creation of such consortia, ultimately leading to improvements in the quality of clinical research and patient care.

Incidence and management of pleural effusions in patients with Wilms tumor: A Pediatric Surgical Oncology Research Collaborative study.

Wilms tumor (WT) is the most common renal malignancy in children. Children with favorable histology WT achieve survival rates of over 90%. Twelve percent of patients present with metastatic disease, most commonly to the lungs. The presence of a pleural effusion at the time of diagnosis of WT may be noted on staging imaging; however, minimal data exist regarding the significance and prognostic importance of this finding. The objectives of our study are to identify the incidence of pleural effusions in patients with WT, and to determine the potential impact on oncologic outcomes. A multi-institutional retrospective review was performed from January 2009 to December 2019, including children with WT and a pleural effusion on diagnostic imaging treated at Pediatric Surgical Oncology Research Collaborative (PSORC) participating institutions. Of 1259 children with a new WT diagnosis, 94 (7.5%) had a pleural effusion. Patients with a pleural effusion were older than those without (median 4.3 vs 3.5 years; P = .004), and advanced stages were more common (local stage III 85.9% vs 51.9%; P < .0001). Only 14 patients underwent a thoracentesis for fluid evaluation; 3 had cytopathologic evidence of malignant cells. Event-free and overall survival of all children with WT and pleural effusions was 86.2% and 91.5%, respectively. The rate and significance of malignant cells present in pleural fluid is unknown due to low incidence of cytopathologic analysis in our cohort; therefore, the presence of an effusion does not appear to necessitate a change in therapy. Excellent survival can be expected with current stage-specific treatment regimens.

Concurrent Multicystic Dysplastic Kidney, Posterior Urethral Valves, and Obstructive Ureterocele in a Male Pediatric Patient: A Case Report.

Congenital anomalies of the kidney and urinary tract (CAKUT) are diagnosed in approximately 3-6 per 1000 live births and represent a spectrum of urologic conditions impacting the kidneys, ureter, bladder, and urethra.1 Although both are considered under the classification of CAKUT, there is no known unifying pathophysiologic mechanism for ureteroceles and posterior urethral valves with only 1 case report noted in the literature. Herein we report the only documented case of a patient with CAKUT related to posterior urethral valves, ureterocele, and multicystic dysplastic kidney.

Where to start? Injury prevention priority scores for traumatic injuries in Canada.

BACKGROUND: Given limited resources for injury prevention, it is essential to determine which mechanisms of injury to target to provide the most benefit to the largest proportion of the population. We developed objective, evidence-based injury prevention priority scores (IPPSs) for the Canadian population across 4 prevention perspectives: mortality, injury severity, resource use and societal cost. METHODS: We performed a retrospective cohort study of all injuries in Canada from 2009/10 to 2013/14. Hospital admissions were obtained from the Discharge Abstract Database, and deaths from the Statistics Canada Canadian Vital Statistics Death Database. For each mechanism of injury, we calculated an IPPS as a balanced measure of injury frequency and 1) mortality rate, 2) median 1 - ICISS (Injury Severity Score derived from the International Statistical Classification of Diseases and Related Health Problems, 10th revision, enhanced Canadian version), 3) median cost per hospital stay or 4) median potential years of life lost (PYLL), providing a ranking of mechanisms of injury in priority order. The IPPS by definition has a mean of 50 and a standard deviation of 10. The higher the IPPS, the higher the priority for injury prevention. RESULTS: A total of 694 535 injuries were identified over the study period. The most frequent mechanism of injury was falls (391 068 [56.3%]). The overall mortality rate was 0.09 deaths/injured person, the median 1 - ICISS was 0.017, the median cost was $5217, and the median PYLL was 0. The mechanisms with the 3 highest IPPSs were falls (75), self-harm (67) and drowning (66) for mortality; falls (77), drowning (70) and suffocation (61) for severity; falls (80), suffocation (63) and fire (60) for resource use; and falls (72), assault (62), and firearms and legal interventions (59 in both cases) for societal cost. CONCLUSION: This study produced IPPSs for traumatic injuries in Canada that provide objective and quantifiable methods for identifying mechanisms of injury to target for specific prevention initiatives. Preventing falls would provide the most benefit to the largest proportion of Canadians and should be prioritized in injury-prevention policy.

Shared decision-making for pediatric elective penile surgery.

INTRODUCTION: In pediatric surgery, proxy decision-makers are frequently involved in treatment planning and may experience decisional conflict (DC). Shared decision-making (SDM) approaches may be effective to remedy DC. This study investigates DC and SDM involvement in elective pediatric penile surgery. METHODS: Forty-four parents of children aged <8 years undergoing elective penile surgery consultations at a tertiary pediatric hospital were prospectively enrolled. Patient and physician questionnaires were used to assess the SDM process and the SURE (Sure of myself; Understand information; Risk-benefit ratio; Encouragement) screening test was used to assess DC. RESULTS: Thirty-seven (84.1%) mothers and seven (15.9%) fathers were enrolled for circumcision (n=33, 75.0%) and distal hypospadias repair (n=11, 25.0%) consultations, with 21 (47.7%) choosing to proceed with surgery. Seven (15.9%) participants experienced clinically significant DC. Participant gender was not associated with higher levels of DC (p=0.318). The average patient and physician SDM scores were 88.2±10.0 and 85.3±7.4, respectively, with no correlation found between participant and physician perception of SDM involvement (p=0.168, p=0.276). DC was significantly associated with lower participant and physician ratings of SDM. CONCLUSIONS: There was a high perception of SDM involvement by both parents and pediatric urologists regarding elective penile surgery. Of the 15% of parents experiencing DC, there was an association with lower participant and physician levels of SDM involvement. Despite high SDM scores overall, discrepancies exist between the perceived physician and participant SDM involvement.