Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 55
Filtrar
1.
Urology ; 2024 Feb 29.
Artigo em Inglês | MEDLINE | ID: mdl-38431159

RESUMO

MATERIALS AND METHODS: An Institutional Review Board-exempt REDCap survey was distributed through the Society of Academic Urologists to all 508 applicants registered for the 2023 Urology Match following the rank list submission deadline on January 10, 2023. The survey closed on February 1, 2023. Responses were anonymized, aggregated, and characterized using descriptive statistics. Thematic mapping of open text comments was performed by 2 reviewers. RESULTS: The response rate was 42% (215/508). Eighty-eight percent of respondents disapproved of the Dobbs ruling. Twenty percent of respondents (15% male/24% female) eliminated programs in states where abortion is illegal. Fifty-nine percent (51% male/70% female) would be concerned for their or their partner's health if they matched in a state where abortion was illegal, and 66% (55% male/82% female) would want their program to assist them or their partner if they required abortion care during residency. Due to the competitive nature of Urology, 68% of applicants reported feeling at least somewhat obligated to apply in states where abortion legislation conflicts with their beliefs. Of the 65 comments provided by respondents, 4 common themes emerged: (1) avoidance of states with restrictive abortion laws; (2) inability to limit applications because of the competitiveness of urology; (3) impacts on personal health care; and (4) desire for advocacy from professional urology organizations. CONCLUSION: The Dobbs ruling will impact the urology workforce by affecting urology applicants' decision-making regarding residency selection and ranking. Although the competitiveness of the Urology Match pressures applicants to apply broadly, many are taking reproductive health care access into consideration.

2.
Hosp Pediatr ; 14(3): 189-196, 2024 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-38374793

RESUMO

OBJECTIVES: Children with certain congenital anomalies of the kidney and urinary tract and neurogenic bladder (CAKUT/NGB) are at higher risk of treatment failure for urinary tract infections (UTIs) than children with normal genitourinary anatomy, but the literature describing treatment and outcomes is limited. The objectives of this study were to describe the rate of treatment failure in children with CAKUT/NGB and compare duration of antibiotics between those with and without treatment failure. METHODS: Multicenter retrospective cohort of children 0 to 17 years old with CAKUT/NGB who presented to the emergency department with fever or hypothermia and were diagnosed with UTI between 2017 and 2018. The outcome of interest was treatment failure, defined as subsequent emergency department visit or hospitalization for UTI because of the same pathogen within 30 days of the index encounter. Descriptive statistics and univariates analyses were used to compare covariates between groups. RESULTS: Of the 2014 patient encounters identified, 482 were included. Twenty-nine (6.0%) of the 482 included encounters had treatment failure. There was no difference in the mean duration of intravenous antibiotics (3.4 ± 2.5 days, 3.5 ± 2.8 days, P = .87) or total antibiotics between children with and without treatment failure (10.2 ± 3.8 days, 10.8 ± 4.0 days, P = .39) Of note, there was a higher rate of bacteremia in children with treatment failure (P = .04). CONCLUSIONS: In children with CAKUT/NGB and UTI, 6.0% of encounters had treatment failure. Duration of antibiotics was not associated with treatment failure. Larger studies are needed to assess whether bacteremia modifies the risk of treatment failure.


Assuntos
Bacteriemia , Infecções Urinárias , Sistema Urinário , Anormalidades Urogenitais , Refluxo Vesicoureteral , Criança , Humanos , Recém-Nascido , Lactente , Pré-Escolar , Adolescente , Estudos Retrospectivos , Infecções Urinárias/tratamento farmacológico , Infecções Urinárias/epidemiologia , Falha de Tratamento , Antibacterianos/uso terapêutico
3.
Artigo em Inglês | MEDLINE | ID: mdl-37966460

RESUMO

BACKGROUND: Pediatric renal trauma is rare and lacks sufficient population-specific data to generate evidence-based management guidelines. A non-operative approach is preferred and has been shown to be safe. However, bleeding risk assessment and management of collecting system injury is not well understood. We introduce the Multi-institutional Pediatric Acute Renal Trauma Study (Mi-PARTS), a retrospective cohort study designed to address these questions. This manuscript describes the demographics and contemporary management of pediatric renal trauma at Level I trauma centers in the United States. METHODS: Retrospective data were collected at 13 participating Level I trauma centers on pediatric patients presenting with renal trauma between 2010-2019. Data were gathered on demographics, injury characteristics, management, and short-term outcomes. Descriptive statistics were used to report on demographics, acute management and outcomes. RESULTS: In total 1216 cases were included in this study. 67.2% were male, and 93.8% had a blunt injury mechanism. 29.3% had isolated renal injuries. 65.6% were high-grade (AAST Grade III-V) injuries. The mean Injury Severity Score (ISS) was 20.5. Most patients were managed non-operatively (86.4%) 3.9% had an open surgical intervention, including 2.7% having nephrectomy. Angioembolization was performed in 0.9%. Collecting system intervention was performed in 7.9%. Overall mortality was 3.3% and was only observed in polytrauma. The rate of avoidable transfer was 28.2%. CONCLUSION: The management and outcomes of pediatric renal trauma lacks data to inform evidence-based guidelines. Non-operative management of bleeding following renal injury is a well-established practice. Intervention for renal trauma is rare. Our findings reinforce differences from the adult population, and highlights opportunities for further investigation. With data made available through Mi-PARTS we aim to answer pediatric specific questions, including a pediatric-specific bleeding risk nomogram, and better understanding indications for interventions for collecting system injuries. LEVEL OF EVIDENCE: IV, Epidemiological (prognostic/epidemiological, therapeutic/care management, diagnostic test/criteria, economic/value-based evaluations, and Systematic Review and Meta-Analysis).

4.
J Perinatol ; 2023 Sep 21.
Artigo em Inglês | MEDLINE | ID: mdl-37735209

RESUMO

The Children's Hospital Working Group has developed an ethical framework to guide patient care and research for prenatally diagnosed severe renal anomalies. It identifies ethical challenges in communication, timing of decisions and scarce resources. Key elements include shared decision-making, establishing a trusting relationship, and managing disagreement. The ethical framework will be used to develop a clinical pathway that operationalizes the key values of trust, honesty, transparency, beneficence, nonmaleficence, respecting parental authority, professional integrity, and justice.

5.
PEC Innov ; 2: 100142, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37588298

RESUMO

Objective: The purpose of the current study was to understand what families identify as necessary information to guide decision-making in the treatment of their child with UPJO. Methods: We conducted semi-structured interviews with parents of children with UPJO using phenomenological methodology. Data were systematically analyzed according to principles of thematic analysis, using a team-based inductive approach. Results: 32 parents were interviewed. Findings are organized by three major themes including barriers to meaningful participation in decision making, logistical aspects of the decision, and psychosocial aspects of the decision. Conclusion: These findings suggest the need to increase parent education and understanding around medical and surgical decision-making, and the need to enhance psychosocial support for more meaningful parental engagement in the surgical decision-making process. Practice implications: The findings from the interviews highlight the importance of caregivers needing clear and accurate information in order to engage in meaningful discussions related to surgical decision-making for decisions around surgery for UPJO treatment.

6.
Urology ; 173: e17-e19, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36495950

RESUMO

Fetal megacystis, or an enlarged fetal bladder, is most often attributed to embryological defects, occurring early in gestation. Recent investigations have demonstrated that the underlying etiology of megacystis may be more myriad than originally thought. We present the third reported patient with megacystis due to an ACTA2 Arg179 substitution variant causing Multisystemic Smooth Muscle Dysfunction Syndrome. We also provide a description of pediatric evaluation and follow up. The growing number of cases in which this ACTA2 variant has been identified in fetal megacystis suggests that molecular sequencing is an appropriate consideration, particularly prenatally, when other features of Multisystemic Smooth Muscle Dysfunction Syndrome cannot be detected.


Assuntos
Doenças Fetais , Bexiga Urinária , Feminino , Humanos , Criança , Duodeno , Músculo Liso , Actinas/genética
7.
J Pediatr Urol ; 19(2): 192.e1-192.e8, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36585277

RESUMO

BACKGROUND: Initial management of pediatric patients with neurogenic bladder is focused on clean intermittent catheterization and medical therapies. Those with more hostile or small capacity bladders require surgical intervention including bladder augmentation that can result in significant clinical sequelae. This study examines a rarely described approach wherein the bladder reconstruction is extraperitonealized by bringing bowel segments through a peritoneal window and then closed. OBJECTIVE: The aim of this study was to determine if the rate of bladder rupture and subsequent morbidity differed between patients who have undergone an intraperitoneal versus extraperitoneal bladder augmentation. We hypothesized that an extraperitoneal approach reduced the risk of intraperitoneal bladder perforation, downstream Intensive Care Unit (ICU) admission, small bowel obstruction (SBO) requiring exploratory laparotomy, and ventriculoperitoneal (VP) shunt-related difficulties as compared to the standard intraperitoneal technique. METHODS: A retrospective chart review was conducted to assess surgical approach and outcomes in patients who underwent bladder augmentation performed between January 2009 and June 2021. Patients were identified through an existing database and manual chart review was conducted to extract data through imaging studies, operative notes, and clinical documentation. The primary outcome was bladder perforation. Secondary outcomes were ICU admission, exploratory laparotomy, and VP shunt externalization, infection, or revision for any cause. Nonparametric statistical analyses were performed. RESULTS: A total of 111 patients underwent bladder augmentation with 37 intraperitoneal and 74 extraperitoneal procedures. Median follow up was 5.8 years [IQR 3.0-8.6 years] and did not vary between groups (P = 0.67). Only one patient was found to have a bladder perforation in the intraperitoneal group (log-rank P = 0.154). There were no significant differences in time to post-augmentation ICU admission, exploratory laparotomy, or VP shunt events between the two groups (log-rank P = 0.294, log-rank P = 0.832, and log-rank P = 0.237, respectively). Furthermore, a Kaplan-Meier analysis assessing time to composite complication demonstrated no significant difference between the two techniques (log-rank P = 0.236). DISCUSSION: This study provides important data comparing the rate of bladder perforation and subsequent morbidity between intraperitoneal and extraperitoneal bladder augmentation. As expected, with a complex procedure, both groups suffered complications, but these data showed no difference between the two procedures. Rates of prior (abdominal) surgery may influence the decision to perform this procedure extraperitoneal. CONCLUSIONS: Outcomes related to bladder perforation and secondary consequences do not differ significantly between patients who had bladder augmentation performed with an intraperitoneal versus extraperitoneal approach. Given the low number of adverse events in this study, larger studies are warranted.


Assuntos
Doenças da Bexiga Urinária , Bexiga Urinaria Neurogênica , Humanos , Criança , Bexiga Urinária/cirurgia , Estudos Retrospectivos , Doenças da Bexiga Urinária/etiologia , Doenças da Bexiga Urinária/cirurgia , Procedimentos Cirúrgicos Urológicos/efeitos adversos , Procedimentos Cirúrgicos Urológicos/métodos , Bexiga Urinaria Neurogênica/etiologia , Bexiga Urinaria Neurogênica/cirurgia
8.
Pediatr Surg Int ; 39(1): 25, 2022 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-36454296

RESUMO

PURPOSE: To evaluate the effect of a guidelines-based best practice alerts (BPA) in the electronic health record (EHR) on adherence to American Urological Association (AUA) vesicoureteral reflux (VUR) guidelines. METHODS: Retrospective cohort study of patients aged 0-17 years old with primary VUR with an initial urology clinic visit the year before or year after BPA implementation was done. Primary outcomes include obtaining vital signs, urinalysis, and ultrasound at initial and 1-year follow-up visit. RESULTS: We identified 123 patients with initial visits during the study period, 58 of whom returned for 1-year follow-up visits. Patients seen post-BPA were more likely to have height measured at initial visit than those seen pre-BPA (47.3% vs. 11.8%, p < 0.001). The majority of patients were screened with weight (98.3%) and ultrasound (87.9%) at 1-year follow-up both before and after BPA implementation. Neither blood pressure measurements (59.1% vs. 55.6%, p > 0.5) nor urinalysis orders (23.8% vs. 19.4%, p > 0.05) significantly increased post-BPA. CONCLUSION: The use of an EHR-based BPA increased the likelihood of obtaining height measurements by clinic intake staff but did not significantly affect provider adherence to other practice guideline recommendations. Our findings suggest that BPA implementation alone is not sufficient to impact provider uptake of VUR guideline recommendations.


Assuntos
Registros Eletrônicos de Saúde , Refluxo Vesicoureteral , Humanos , Recém-Nascido , Lactente , Pré-Escolar , Criança , Adolescente , Estudos Retrospectivos , Instituições de Assistência Ambulatorial , Probabilidade
9.
Fetal Diagn Ther ; 49(9-10): 411-418, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36198283

RESUMO

INTRODUCTION: The advent of novel fetal interventions has increased interest in interventions for previously "lethal" anomalies such as bilateral renal agenesis or other congenital anomalies of the kidney and urinary tract (CAKUT) associated with in utero renal failure. While there have been rare reports of successful births following intervention in these cases, there is a paucity of data regarding the risks, benefits, and outcomes of intervention. To address this gap, this study presents our experience with fetal intervention for anatomic or functional renal agenesis. CASE PRESENTATION: A retrospective review was conducted for patients referred to the Colorado Fetal Care Center (CFCC) between 2013 and 2019 for evaluation of CAKUT anomalies. Eligibility was determined by a multidisciplinary team. Amnioinfusion was scheduled prior to 24 weeks gestation, with normal saline or lactated ringers infused as needed to obtain a "normal" amniotic fluid volume. During this time period, a total of 5 cases received fetal amnioinfusion for treatment of bilateral renal agenesis or bladder outlet obstruction. All 5 cases reached birth. 3/5 cases expired on day one of life. 1/2 of the remaining infants expired at 3 months secondary to peritoneal dialysis failure. The remaining infant is 4 years. Developmentally, she is on track with cognitive and language skills but is behind with general motor skills. We observed a 30-day mortality of 60% and 1-year mortality of 80%. CONCLUSIONS: Individuals carrying a pregnancy complicated by CAKUT anomalies face a difficult choice when considering intervention. Morbidity and mortality remain high at this stage of this evolving therapy, including difficulty with retaining infused intra-amniotic fluid >72 h and complications with peritoneal dialysis after birth. The surviving infant in this case series is 4 years. She currently awaits renal transplantation. These findings reinforce that treatment of these cases should remain experimental and large-scale multicenter trials are needed to determine the optimal indications for prenatal intervention.


Assuntos
Líquido Amniótico , Rim , Lactente , Gravidez , Feminino , Humanos , Rim/diagnóstico por imagem , Rim/anormalidades , Ultrassonografia Pré-Natal
11.
J Pediatr Urol ; 18(4): 502.e1-502.e9, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35810140

RESUMO

BACKGROUND: Management of the neurogenic bladder is variable, complex, and often requires a demanding bladder care regimen which may present caregiver burdens that are unique among chronic disease. While research into patient quality of life is increasing, parallel study of the caregiver experience is scant. Existing research primarily comprises survey data using validated instruments originally developed for non-urologic conditions, such as dementia. These surveys may detect high caregiver burden and decreased quality of life amongst caregivers but are limited in their ability to understand the underlying causes. OBJECTIVE: To characterize the experience of those caring for children with neurogenic bladders, with a focus on unexpected burdens and challenges. METHODS: In light of limited existing research, a qualitative research methodology was selected to explore the caregiver experience. Semi-structured phone interviews were conducted with primary caregivers of children with neurogenic bladder, all of whom were patients in the pediatric urology department of a single tertiary pediatric referral center. Purposive sampling was used to ensure diverse representation. Interviews were recorded, transcribed, and professionally translated if needed. Transcripts were analyzed using a team-based inductive grounded-theory approach, facilitated by ATLAS. ti software. Member-checking focus groups were held to validate the results. RESULTS: Twenty-five caregivers were interviewed (20 in English, 5 in Spanish), at which point thematic saturation was reached. Three primary themes emerged surrounding the topic of unexpected challenges: 1. High caregiver burden, 2. Challenges with catheterization and supplies, 3. Urinary tract infections. Member-checking focus groups validated the thematic analysis and provided additional insights into mitigating factors for these challenges. A child's independence with his or her health care regimen was cited as particularly important for decreasing caregiver burden. DISCUSSION: Caregivers of children with neurogenic bladder report their role is more difficult than they anticipated it would be. Catheterization represents a particularly burdensome task, and recurrent infections are an unexpected and persistent medical challenge. Understanding unexpected challenges that caregivers face will help pediatric urologists target modifiable factors to decrease caregiver burden, address current gaps in counseling and expectation-setting, and set the stage for more complete shared decision-making. CONCLUSIONS: This study represents an initial qualitative characterization of the experience caring for a child with neurogenic bladder. This is a key first step in understanding how caregivers make decisions for their children and their families. This initial study is foundational to a larger project to create a decision aid for caregivers of children with neurogenic bladder.


Assuntos
Cuidadores , Bexiga Urinaria Neurogênica , Humanos , Criança , Masculino , Feminino , Cuidadores/psicologia , Bexiga Urinaria Neurogênica/terapia , Bexiga Urinaria Neurogênica/psicologia , Qualidade de Vida , Pesquisa Qualitativa , Inquéritos e Questionários
12.
Urology ; 169: 207-210, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-35680050

RESUMO

Although anhydramnios due to in utero renal failure has traditionally been considered lethal, in utero interventions offer the potential for pulmonary survival. As fetal interventions become more common, questions arise about how to identify and counsel eligible candidates.  In this report we describe the presentation and management of a 17-year-old pregnant female who presented from out-of-state with severe lower urinary tract obstruction (LUTO) with associated anhydramnios, focusing on the ethical questions that this case raised.


Assuntos
Doenças Fetais , Insuficiência Renal , Doenças Uretrais , Obstrução Uretral , Sistema Urinário , Gravidez , Feminino , Humanos , Adolescente , Doenças Fetais/diagnóstico , Doenças Fetais/cirurgia , Obstrução Uretral/etiologia , Obstrução Uretral/cirurgia , Obstrução Uretral/diagnóstico , Sistema Urinário/diagnóstico por imagem , Insuficiência Renal/diagnóstico , Ultrassonografia Pré-Natal
13.
J Pediatr Urol ; 18(6): 788.e1-788.e8, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35644792

RESUMO

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.


Assuntos
Documentação , Registros Eletrônicos de Saúde , Lactente , Criança , Humanos , Estudos de Viabilidade , Bases de Dados Factuais , Assistência Ambulatorial
14.
J Pediatr Urol ; 18(6): 804-811, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35501240

RESUMO

OBJECTIVES: Ureteral stents are commonly used during pyeloplasty to ensure drainage and anastomotic healing. Antibiotic prophylaxis is often used due to concerns for urinary tract infection (UTI). Although many surgeons prescribe prophylactic antibiotics following pyeloplasty, practices vary widely due to lack of clear evidence-based guidelines. We hypothesize that the rate of stent UTI does not significantly vary between children who receive antibiotics and those who do not. METHODS: We reviewed the medical records of 741 patients undergoing pyeloplasty between January 2010 and July 2018 across seven institutions. Exclusion criteria were: age older than 22 years, no stent placed, externalized stents used, and incomplete records. Surgical approach, age, antibiotic use, stent duration, Foley duration, and urine culture results were recorded. Patients were categorized into two groups, those younger than four years of age and those four years and older as proxy for likely diaper use. Univariate logistic regression was conducted to identify variables associated with UTI. Multivariable backward stepwise logistic regression was used to identify the best model with Akaike information criterion as model selection criteria. The selected model was used to calculate odds ratios and 95% confidence intervals summarizing the association between prophylactic antibiotics and stent UTI while controlling for age, gender, and intra-operative urine cultures. RESULTS: 672 patients were included; 338 received antibiotic prophylaxis and 334 did not. These groups differed in mean age (3.91 vs. 6.91 years, P < .001), mean stent duration (38.5 vs. 35.32 days, P < .001), and surgical approach (53.25% vs. 32.04% open vs. laparoscopic, P < .001). The incidence of stent UTI was low overall (7.59%) and similar in both groups: 31/338 (9.17%) in the prophylaxis group and 20/334 (5.99%) in the non-prophylaxis group (P = .119). Although female gender, likely diaper use, and positive intra-operative urine culture were each associated with significantly higher odds of stent UTI, prophylactic antibiotic use was not associated with significant reduction in stent UTI in any of these groups. Surgical approach, stent duration, and Foley duration were not associated with stent UTI. CONCLUSION: Incidence of stent UTI is low overall following pyeloplasty. Prophylactic antibiotics are not associated with lower rates of stent UTI following pyeloplasty even after controlling for risk factors of female gender, likely diaper use, and positive intra-operative urine culture. Routine administration of prophylactic antibiotics after pyeloplasty does not appear to be beneficial, and may be best reserved for those with multiple risk factors for UTI.


Assuntos
Laparoscopia , Ureter , Infecções Urinárias , Humanos , Criança , Feminino , Adulto Jovem , Adulto , Ureter/cirurgia , Procedimentos Cirúrgicos Urológicos/métodos , Stents/efeitos adversos , Laparoscopia/efeitos adversos , Infecções Urinárias/etiologia , Infecções Urinárias/prevenção & controle , Infecções Urinárias/epidemiologia , Antibacterianos/uso terapêutico , Estudos Retrospectivos
15.
J Pediatr Urol ; 18(3): 353.e1-353.e10, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35341672

RESUMO

BACKGROUND: Surgical intervention in youth with differences of sex development (DSD) is a controversial topic. Historically, evidence suggests that genital surgery in DSD is associated with mixed patient satisfaction. However, less is known about surgical outcomes under therapeutic advancements in the past several decades. OBJECTIVE: The purpose of the current study is to provide an updated and empirical qualitative examination of the surgical experiences and responses to care of adolescents and young adults (AYA) with DSD in order to fill this gap in the literature and inform patient care. METHODS: Qualitative interviews were conducted with 37 AYA (ages 12-26) with DSD. Interviews were transcribed, coded, and analyzed thematically. RESULTS: Three major themes were identified: 1) knowledge related to surgery; 2) surgical and medical experience; and 3) psychosocial factors related to surgery. Results demonstrated that most AYA were not involved in the decision to pursue surgery and were observed to have varying levels of knowledge regarding their surgeries. Most participants in the current study had received a DSD-related surgery and the majority described having positive surgical experiences and few regrets. Nonetheless, AYA described both medical and psychosocial challenges related to their surgeries and recoveries and offered feedback on ways to improve the surgical process. DISCUSSION: The current study provides a qualitative examination of the surgical experiences of 37 AYA with DSD. Findings highlight the importance of regular and ongoing communication with providers to improve knowledge related to surgery during the decision-making process as well as after surgical intervention. Results underscore the benefits of multidisciplinary teams and the value of patient handouts and decision aids in assisting AYA in the decision to pursue surgical intervention. Other specific recommendations for providers include increased patient privacy during genital exams, greater emphasis on psychoeducation and pain management strategies, and the use of behavioral health services to assist with challenges and social support. CONCLUSIONS: The decision to pursue surgical intervention in youth with DSD remains a complex and controversial issue, and more information regarding patients' perspectives on surgery is needed. The current study provides novel insights into patient experiences of surgical intervention and highlights the need for psychosocial support throughout the shared decision-making process.


Assuntos
Desenvolvimento Sexual , Apoio Social , Adolescente , Adulto , Criança , Humanos , Pesquisa Qualitativa , Adulto Jovem
16.
J Perinatol ; 42(7): 920-924, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35121797

RESUMO

INTRODUCTION: We present a case series of neonates with anuric ESRD undergoing renal replacement therapy (RRT) and discuss the associated ethical implications of RRT in this population. METHODS: We reviewed patients who initiated RRT within 1 week of life due to anuric ESRD from 2009-2019 at a single tertiary center. Primary outcomes were receipt of renal transplant (RT), one-year survival, and overall survival. RESULTS: Five patients met the inclusion criteria. Two patients received an RT. One-year survival was 80%, while overall survival was 60% with a median follow-up of 18 months. In the 2 still-living patients who have not undergone RT, they are ineligible, one due to recent malignancy and the other from acquired cardiovascular comorbidities. CONCLUSION: Patients with anuric ESRD requiring RRT undergo multiple treatment challenges with low RT and survival rates. These findings should be shared with families considering intervention for cases of severe renal disease diagnosed prenatally.


Assuntos
Falência Renal Crônica , Transplante de Rim , Humanos , Recém-Nascido , Falência Renal Crônica/terapia , Sistema de Registros , Diálise Renal , Terapia de Substituição Renal
17.
Int Urol Nephrol ; 53(8): 1485-1495, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-33948809

RESUMO

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.


Assuntos
Pelve Renal/cirurgia , Obstrução Ureteral/cirurgia , Humanos , Hidronefrose/etiologia , Hidronefrose/cirurgia , Lactente , Resultado do Tratamento , Obstrução Ureteral/complicações , Procedimentos Cirúrgicos Urológicos
19.
Curr Opin Pediatr ; 33(2): 227-234, 2021 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-33470672

RESUMO

PURPOSE OF REVIEW: Ureteropelvic junction obstruction (UPJO) is the most common cause of prenatally diagnosed hydronephrosis. Although associated with obstruction of the kidney, the natural history is variable, ranging from spontaneous resolution to progressive loss of function over the first few years of life. As a result, the optimal evaluation strategy and indications for treatment have not been well defined. The purpose of this article is to review recent literature focused on the prenatal and postnatal evaluation of infants with prenatally diagnosed hydronephrosis suspicious for UPJO. RECENT FINDINGS: Recent studies have focused on the effect of the urinary tract dilation (UTD) ultrasound classification system, as well as use of magnetic resonance imaging both prenatally and postnatally to stratify the risk of infants with prenatally diagnosed hydronephrosis to develop renal impairment or undergo surgery. Additionally, urinary biomarkers have been identified as a potential noninvasive alternative to diuretic renography in identifying infants with clinically significant UPJO. SUMMARY: Although continued work is needed to develop clear guidelines for evaluation and treatment and to better define long-term outcomes, these studies offer novel approaches to improve the care of these patients.


Assuntos
Hidronefrose , Obstrução Ureteral , Feminino , Humanos , Hidronefrose/diagnóstico , Hidronefrose/terapia , Lactente , Rim , Gravidez , Ultrassonografia , Obstrução Ureteral/diagnóstico , Obstrução Ureteral/terapia
20.
J Pediatr Surg ; 56(3): 620-625, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-32467035

RESUMO

INTRODUCTION: The purpose of this study was to understand pediatric urologists' perceived role of patient characteristics on discussions about treatment of infants with suspected UPJ obstruction. METHODS: We conducted semi-structured interviews with pediatric urologists from three geographically diverse sites. Interview domains included: clinical indications for surgery, discussions with parents, and consideration of parent socioeconomic factors. Transcribed data and field notes were analyzed using a team-based, inductive grounded theory approach. RESULTS: Thirteen physicians were interviewed. Physicians reported a standardized approach to discussions to facilitate parental understanding. While they did not report overt consideration of demographics, they tailored discussions based on educational and cultural background and language barriers. Physicians also reported that concerns about risk of loss to follow up contributed to their treatment recommendations. Most physicians recognized that the lack of clear data often led to use of personal experience to guide recommendations. CONCLUSION: Physicians recognize a gap in data to guide surgical decisions and utilize personal experience to augment this gap. They also recognize the influence of educational and language barriers on discussions with families and consider risk of loss to follow up when making recommendations, suggesting an implicit consideration of demographics. These findings suggest that development of evidence-based guidelines may reduce treatment variations. LEVEL OF EVIDENCE: Not applicable (qualitative research study written in compliance with COREQ guidelines).


Assuntos
Médicos , Obstrução Ureteral , Criança , Humanos , Lactente , Pais , Pesquisa Qualitativa , Obstrução Ureteral/cirurgia , Urologistas
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA
...