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PURPOSE: Our goal was to understand the general attitudes of pediatric urologists regarding the US News & World Report rankings for Best Children's Hospitals in Urology. MATERIALS AND METHODS: We performed a cross-sectional survey study distributed via email to active and candidate members of the Societies of Pediatric Urology from October 2022 to December 2022. This anonymous survey was iteratively developed to contain multiple choice questions gathering information on demographics, personal interaction with the rankings system, and about attitudes toward the rankings across various domains. RESULTS: Of the 515 members surveyed, 264 pediatric urologists responded to the survey for a response rate of 51%. There was representation from all sections of the AUA and across all age categories and practice models. Overall, of the respondents, 71% disagreed that the rankings had led to improvements in care and 75% disagreed that programs were reporting their data honestly. Additionally, 71% believed the rankings are inaccurate in reflecting patient outcomes. The majority (86%) of respondents stated they would support organized efforts to withdraw from the rankings. This was significantly different by ranking cohort, with 78% from top 10 programs endorsing withdrawal vs 89% from those programs not in the top 10. CONCLUSIONS: Our survey found that most pediatric urologists would support efforts to withdraw from participating in the rankings and believe that programs are dishonest in reporting their data. The majority also do not believe a survey can adequately distinguish between programs. This highlights a clear need for a critical reevaluation of the rankings.
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PURPOSE: We sought to assess associations between health-related quality of life (QOL), bladder-related QOL, bladder symptoms, and bladder catheterization route among adolescents and young adults with spina bifida. MATERIALS AND METHODS: Clinical questionnaires administered to individuals ≥ 12 years old requiring catheterization between June 2019 to March 2020 in a spina bifida center were retrospectively analyzed. Questionnaires were completed in English or Spanish independently or with caregiver assistance. Medical records were reviewed for demographic and clinical characteristics. Primary exposure was catheterization route (urethra or channel). Primary outcome was health-related QOL, measured by Patient-Reported Outcomes Measurement Information System Pediatric Global Health 7 (PGH-7). Secondary outcomes were bladder-related QOL and bladder symptoms, measured by Neurogenic Bladder Symptom Score (NBSS). Nested, multivariable linear regression models assessed associations between catheterization route and questionnaire scores. RESULTS: Of 162 patients requiring catheterization, 146 completed both the PGH-7 and NBSS and were included. Seventy-three percent were catheterized via urethra and 27% via channel. Median age was 17.5 years (range 12-31), 58% of patients were female, and 80% had myelomeningocele. Urinary incontinence was more common among those who catheterized via urethra (60%) compared to channel (33%). On adjusted analyses, catheterization route was not significantly associated with PGH-7 or NBSS bladder-related QOL scores. More bladder symptoms were associated with worse bladder-related QOL. Patients who catheterized via channel had fewer bladder symptoms than those who catheterized via urethra. CONCLUSIONS: Catheterization route was not significantly associated with QOL. Though catheterization via channel was associated with fewer bladder symptoms, only degree of current bladder symptoms was significantly associated with bladder-related QOL.
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Calidad de Vida , Disrafia Espinal , Vejiga Urinaria Neurogénica , Cateterismo Urinario , Humanos , Adolescente , Femenino , Masculino , Disrafia Espinal/complicaciones , Estudios Retrospectivos , Adulto Joven , Adulto , Niño , Vejiga Urinaria Neurogénica/etiología , Vejiga Urinaria Neurogénica/terapia , Uretra , Encuestas y Cuestionarios , Medición de Resultados Informados por el PacienteRESUMEN
AIM: To assess perspectives on clinical communication about sexual health in young adult males with spina bifida. METHOD: Semi-structured interviews were conducted between February and May 2021 with males at least 18 years of age with spina bifida to assess their perspectives and experiences of sexual health communication with clinicians. Demographic and clinical characteristics were obtained from chart review and a survey of patients. Interviews were transcribed verbatim, and conventional content analysis was used for transcript coding. RESULTS: Twenty individuals participated with a median age of 22 years 6 months (range 18-29 years). Sixteen had myelomeningocele. Most identified as heterosexual (n = 17) and not sexually active (n = 13). Barriers and facilitators of successful interactions were identified. Barriers for participants included general discomfort with talking about sex and variability in individual preferences for how conversations occur. Facilitators included participants' comfort with their urologist and discussing sex in relation to disability. Suggestions for improving discussions included (1) notifying individuals that discussion about sex will occur before clinic visits; (2) creating space for discussions; (3) respecting individuals' readiness to discuss; and (4) making discussions disability specific. INTERPRETATION: Young adult males with spina bifida are interested in discussing sexual health with their clinicians. Great variability exists about conversation preferences, emphasizing the need to individualize clinical communication about sex. Current health guidelines for males may not be in line with individuals' wishes. WHAT THIS PAPER ADDS: Great variability exists in individual preference around sexual health communication. Patient-level barriers hinder successful conversations about sex. Individuals have great insight into how conversations about sex can be improved.
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Comunicación en Salud , Salud Sexual , Disrafia Espinal , Adulto Joven , Humanos , Masculino , Lactante , Preescolar , Conducta Sexual , Disrafia Espinal/complicacionesRESUMEN
PURPOSE: We evaluate the applicability of the International Index of Erectile Function in young men with spina bifida and identify spina bifida-specific sexual experiences not captured by this measure. MATERIALS AND METHODS: Semistructured interviews were conducted between February 2021 and May 2021 with men ≥18 years of age with spina bifida. The International Index of Erectile Function was completed by participants, and perspectives on its applicability were discussed. Participant experiences and perspectives around sexual health were discussed to identify aspects of the sexual experience not well captured by the International Index of Erectile Function. Demographic and clinical characteristics were obtained from a patient survey and chart review. Conventional content analysis framework was used for transcript coding. RESULTS: Of 30 eligible patients approached, 20 participated. Median age was 22.5 years (range 18-29), and 80% had myelomeningocele. Most identified as heterosexual (17/20, 85%), were not in a relationship (14/20, 70%), and were not currently sexually active (13/20, 65%). Some perceived the International Index of Erectile Function as applicable, while others reported it was not, as they do not define themselves as sexually active. Aspects of the sexual experience not captured by the International Index of Erectile Function included (1) lack of control over sexual function, (2) poor lower body sensation, (3) urinary incontinence, (4) spina bifida-specific physical limitations, and (5) psychosocial barriers. Participant suggestions for improving the International Index of Erectile Function to increase its applicability were identified. CONCLUSIONS: While many perceived the International Index of Erectile Function as applicable, the measure inadequately captures the diverse sexual experiences of young men with spina bifida. Disease-specific instruments to evaluate sexual health are needed in this population.
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Disfunción Eréctil , Meningomielocele , Salud Sexual , Disrafia Espinal , Masculino , Humanos , Adolescente , Adulto Joven , Adulto , Disfunción Eréctil/diagnóstico , Disfunción Eréctil/etiología , Conducta Sexual , Disrafia Espinal/complicacionesRESUMEN
PURPOSE: Clean intermittent catheterization (CIC) responsibility among youths with spina bifida is not well studied. We sought to determine longitudinal trajectories of CIC responsibility to examine the transition of CIC responsibility from caregiver-CIC to self-CIC. MATERIALS AND METHODS: We performed a secondary analysis of a prospective cohort study of youths with spina bifida. Participants aged 8-15 years originally recruited from 4 hospitals and a statewide spina bifida association were followed every 2 years. Participants who required CIC were included. Group-based trajectory modeling was used to isolate distinct trajectories of CIC responsibility, which was the primary outcome and was graded from caregiver-CIC to shared-CIC to self-CIC. Predictors of trajectory group membership were entered into multivariate logistic regression models and included various demographic, clinical and psychosocial characteristics such as CIC adherence and CIC mastery. RESULTS: Of 140 youths in the original cohort study, 89 met eligibility criteria for this study. Mean age was 11 years at enrollment and 93% of patients had myelomeningocele. Two distinct trajectory groups emerged: 17% of patients had a low-flat trajectory and 83% had a high-increasing trajectory of CIC responsibility, with shared-CIC by age 8-9 years and increasing self-CIC responsibility thereafter. Significant predictors of group membership in the high-increasing trajectory group included less severe spinal lesion levels, higher CIC mastery and lower CIC adherence. CONCLUSIONS: Nearly 1 in 5 youths with spina bifida in our cohort persistently required caregiver-CIC over time, while the remainder achieved shared-CIC responsibility by age 8-9 years, with increasing self-CIC responsibility thereafter.
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Cateterismo Uretral Intermitente , Autocuidado , Vejiga Urinaria Neurogénica/terapia , Adolescente , Niño , Femenino , Humanos , Masculino , Estudios Prospectivos , Disrafia Espinal/complicaciones , Vejiga Urinaria Neurogénica/etiologíaRESUMEN
PURPOSE: Robot-assisted laparoscopic pyeloplasty (RALP) use in children has increased, though many centers still favor open pyeloplasty (OP) in infants. This study aims to compare safety and efficacy of RALP and OP in infants. MATERIALS AND METHODS: A single-institution, retrospective cohort study of infants <1 year of age who underwent primary RALP or OP between January 2009 and June 2020 was performed. Primary outcomes were intraoperative and 30-day complications, postoperative radiographic improvement at last clinic visit, and operative failure leading to redo pyeloplasty. Multivariable logistic regression was performed for 30-day complications to adjust for demographic variation between groups. Survival analysis was performed to compare time to diagnosis of operative failure leading to redo pyeloplasty. RESULTS: Among 204 patients, 121 underwent OP and 83 underwent RALP (74.5% male). RALP patients were older (median 7.2 vs 2.9 months, p <0.001) and larger (median 8.2 vs 5.9 kg, p <0.001) than OP patients. Radiographic improvement was seen in 91.1% of RALP patients and 88.8% of OP patients at last visit. Median (interquartile range) followup in months was 24.4 (10.8-50.3) for the full cohort. In adjusted analysis, the odds of a 30-day complication (OR 0.40, 95% CI 0.08-2.00) was lower for RALP compared to OP, though not statistically significant. In survival analysis, there was no difference in time to diagnosis of operative failure and redo pyeloplasty between groups (p=0.65). CONCLUSIONS: RALP is a safe and effective alternative to OP for infants, with comparable intraoperative and 30-day complications, radiographic improvement at last followup, and risk of pyeloplasty failure.
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Pelvis Renal/cirugía , Laparoscopía/efectos adversos , Procedimientos de Cirugía Plástica/efectos adversos , Complicaciones Posoperatorias/epidemiología , Procedimientos Quirúrgicos Robotizados/efectos adversos , Obstrucción Ureteral/cirugía , Femenino , Estudios de Seguimiento , Humanos , Lactante , Recién Nacido , Pelvis Renal/diagnóstico por imagen , Laparoscopía/estadística & datos numéricos , Tiempo de Internación/estadística & datos numéricos , Masculino , Tempo Operativo , Complicaciones Posoperatorias/etiología , Procedimientos de Cirugía Plástica/métodos , Procedimientos de Cirugía Plástica/estadística & datos numéricos , Estudios Retrospectivos , Procedimientos Quirúrgicos Robotizados/estadística & datos numéricos , Análisis de Supervivencia , Resultado del Tratamiento , Uréter/diagnóstico por imagen , Uréter/cirugía , Obstrucción Ureteral/congénito , Obstrucción Ureteral/mortalidadRESUMEN
PURPOSE: We systematically reviewed the variability in definitions of kidney abnormality (KA) outcomes in individuals with spina bifida (SB). MATERIALS AND METHODS: A systematic scoping review was conducted using MEDLINE, Embase™, Cochrane Library, CINAHL, PsycInfo®, Web of Science™ and ClinicalTrials.gov for articles from time of database inception to September 2020. No language or patient age restrictions were applied. Primary research articles involving individuals with SB where KA was assessed as an outcome were included. Means of assessing KA and defining KA severity were abstracted. RESULTS: Of 2,034 articles found, 274 were included in the review. Most articles were published after 1990 (63.5%) and included pediatric-only populations (0-18 years; 60.5%). KA outcomes were identified by imaging-based anatomical outcomes (84.7%), serum-based outcomes (44.9%), imaging-based functional outcomes (5.5%), urine-based outcomes (3.3%) and diagnoses of end-stage kidney disease (2.6%) or chronic kidney disease otherwise unspecified (1.8%). Hydronephrosis was the most commonly used specific outcome (64.6%, 177/274) with 19.8% (35/177) of articles defining hydronephrosis severity. Hydronephrosis was used more frequently in articles with pediatric-only populations. Creatinine and cystatin-C were used in 82.1% (101/123) and 17.9% (22/123) of articles reporting serum-based outcomes, respectively, with 32.7% and 50.0% of articles defining estimated glomerular filtration rate (GFR) severity. Serum-based outcomes were more common in articles including adults >18 years. Measured GFR was assessed in 9.9% (27/274) of articles, with 44.4% (12/27) of articles defining GFR severity. CONCLUSIONS: Significant variability exists in how authors define KA with few specifically defining KA severity. Consensus and consistency in defining KA outcomes are needed.
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Hidronefrosis , Insuficiencia Renal Crónica , Disrafia Espinal , Adulto , Niño , Femenino , Tasa de Filtración Glomerular , Humanos , Riñón/diagnóstico por imagen , Masculino , Disrafia Espinal/diagnósticoRESUMEN
OBJECTIVE: The objective of the study was to determine if health literacy is associated with health-related quality of life (HRQOL) in adolescents and young adults (AYAs) with spina bifida. STUDY DESIGN: Between June 2019 and March 2020, the Patient-Reported Outcome Measurement Information System Pediatric Global Health-7 (PGH-7), a measure of HRQOL, and the Brief Health Literacy Screening Tool (BRIEF) were administered to patients ≥12 years old with a diagnosis of spina bifida seen in our multidisciplinary spina bifida center. Questionnaires were completed at scheduled clinic visits. The primary outcome was the PGH-7 normalized T-score. The primary exposure was the BRIEF score. Demographic and clinical characteristics were obtained from the medical record. Nested, multivariable linear regression models assessed the association between health literacy and the PGH-7 score. RESULTS: Of 232 eligible patients who presented to clinic, 226 (97.4%) met inclusion criteria for this study. The median age was 17.0 years (range: 12-31). Most individuals were female (54.0%) and had myelomeningocele (61.5%). Inadequate, marginal, and adequate health literacy levels were reported by 35.0%, 28.3%, and 36.7% of individuals. In univariable analysis, higher health literacy levels were associated with higher PGH-7 scores. In nested, sequentially adjusted multivariable linear regression models, a higher health literacy level was associated with a stepwise increase in the PGH-7 score. In the fully adjusted model, adequate health literacy and marginal health literacy, compared with inadequate health literacy, were associated with increases in a PGH-7 score of 3.3 (95% CI: 0.2-6.3) and 1.1 (95% CI: -2.0 to 4.2), respectively. CONCLUSIONS: Health literacy was associated with HRQOL after adjusting for demographic and clinical factors. Strategies incorporating health literacy are needed to improve HRQOL in AYAs with spina bifida.
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Alfabetización en Salud , Disrafia Espinal , Niño , Adolescente , Adulto Joven , Humanos , Femenino , Masculino , Calidad de Vida , Estudios Transversales , Disrafia Espinal/complicaciones , Encuestas y CuestionariosRESUMEN
PURPOSE: Deferring bladder augmentation (BA) may be desirable in a pediatric neurogenic bladder (NGB) with worsening compliance, but prior studies have questioned whether onabotulinum toxin A (BTX) demonstrates durable improvement in compliance. We present our overall experience with BTX and its role in mitigating the "at-risk" NGB, as determined by urodynamic characteristics. METHODS: A retrospective single-institution review of all BTX procedures performed during January 2010 to October 2018 was conducted. Patients with <12 months follow-up after first BTX injection were excluded. Urodynamic studies (UDS) were reviewed to assign National Spina Bifida Patient Registry (NSBPR) as well as institutionally developed (LCH) risk classification groups. Patients were considered "at-risk" for BA if they had any of the following: NSBPR risk grade of intermediate or hostile; LCH risk grades indicating end-fill pressure >25 cmH2 O or detrusor sphincter dyssynergia (DSD); upper tract changes including new hydronephrosis; new or worsening vesicoureteral reflux; or other signs of a hostile urinary tract (i.e., febrile UTIs). UDS risk grades pre and post-first BTX injection were compared in this "at-risk" group, when available. RESULTS: Thirty-nine patients underwent 162 injection procedures over a median follow-up of 65 months interquartile range (IQR 49-81). Median age at first BTX was 10 years and the median number of BTX injections per patient was 4 (IQR 2-7; range 1-12) with a median time of 6 months between injections (IQR 4-10). Twenty-six patients were deemed "at-risk" at the time of first BTX injection, and of those, 16 (61.5%) proceeded to BA at a median of 36 months (IQR 22.5-42). A small number (four) had BA due to upper tract changes or worsening pressures on BTX, while nine patients (five with CKD) proceeded to BA given a lack of sufficient improvement to consider BTX a long-term viable option. Post-first BTX UDS demonstrated downgrading of risk group in 38% and 63% using NSBPR and LCH classifications, respectively. CONCLUSIONS: Encouraging improvements in the urodynamic risk group were noted in some patients. With careful counseling and follow-up, BTX may safely extend the time to BA in some "at-risk" patients.
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Toxinas Botulínicas Tipo A , Fármacos Neuromusculares , Disrafia Espinal , Vejiga Urinaria Neurogénica , Toxinas Botulínicas Tipo A/uso terapéutico , Niño , Humanos , Fármacos Neuromusculares/uso terapéutico , Estudios Retrospectivos , Disrafia Espinal/complicaciones , Resultado del Tratamiento , Vejiga Urinaria , Vejiga Urinaria Neurogénica/tratamiento farmacológico , Urodinámica , Procedimientos Quirúrgicos UrológicosRESUMEN
This study examined the relationship between stimulant medications used for the treatment of attention deficit hyperactivity disorder and semen parameters. We performed a retrospective cohort study at a large, academic institution between 2002 and 2020. We included men with a semen analysis without prior spermatotoxic medication use, empiric medical therapy exposure or confounding medical diagnoses (varicocele, Klinefelter's syndrome, cryptorchidism, cystic fibrosis, diabetes, cancer or cancer-related treatment, and azoospermia). Men were stratified by stimulant exposure (methylphenidate or amphetamines). A multivariable linear regression was fit to assess the association between individual semen parameters, age, stimulant exposure and non-stimulant medication use. Of 8,861 men identified, 106 men had active prescriptions for stimulants within 90 days prior to semen testing. After controlling for age and exposure to non-stimulant medications, stimulant use was associated with decreased total motile sperm count (ß: -18.00 mil/ejaculate and standard error: 8.44, p = 0.033) in the setting of decreased semen volume (ß: -0.35 ml, and standard error: 0.16, p = 0.035), but not sperm concentration, motility and morphology. These findings suggest a role for reproductive physicians and mental health providers to consider counselling men on the potential negative impact of stimulants prescribed for attention deficit hyperactivity disorder on semen volume during fertility planning.
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Trastorno por Déficit de Atención con Hiperactividad , Estimulantes del Sistema Nervioso Central , Metilfenidato , Trastorno por Déficit de Atención con Hiperactividad/tratamiento farmacológico , Estimulantes del Sistema Nervioso Central/efectos adversos , Humanos , Masculino , Metilfenidato/efectos adversos , Estudios Retrospectivos , SemenRESUMEN
PURPOSE: Kidney dysfunction in spina bifida is usually detected by low estimated glomerular filtration rate or ultrasound based hydronephrosis. We assessed the diagnostic test characteristics of hydronephrosis for detecting low estimated glomerular filtration rate, hypothesizing that hydronephrosis has low sensitivity compared to cystatin C based estimated glomerular filtration rate. MATERIALS AND METHODS: We conducted a single center, retrospective cohort study, including patients with spina bifida from 2012-2017 with 2 kidneys and complete data needed to calculate estimated glomerular filtration rate via multiple pediatric (age 1-17.9 years) or adult (age ≥18 years) estimating equations. We evaluated the association of hydronephrosis status (high grade, low grade or none) with estimated glomerular filtration rate, adjusting for small kidney size and scarring, and calculated diagnostic test characteristics of hydronephrosis for low estimated glomerular filtration rate. RESULTS: We analyzed 247 patients (176 children and 71 adults). Mean±SD age was 13.7±6.6 years, and 81% of patients had myelomeningocele. Hydronephrosis (77% low grade) was found in 35/176 children and 18/71 adults. Hydronephrosis was associated with low estimated glomerular filtration rate in stepwise fashion, independent of kidney size and scarring. However, across cystatin C based pediatric equations, any hydronephrosis (compared to none) had 23%-48% sensitivity, and high grade hydronephrosis (compared to none or low grade) had 4%-15% sensitivity for estimated glomerular filtration rate <90 ml/min/1.73 m2, which remained unchanged after excluding small kidneys and scarring. Across cystatin C based adult equations, any and high grade hydronephrosis had 55%-75% and 40%-100% sensitivity, respectively, for estimated glomerular filtration rate <90 ml/min/1.73 m2, although with wide confidence intervals. Specificity was higher with high grade vs any hydronephrosis. Sensitivities were higher for estimated glomerular filtration rate <60 ml/min/1.73 m2. CONCLUSIONS: Hydronephrosis was associated with low estimated glomerular filtration rate but had poor sensitivity for cystatin C based estimated glomerular filtration rate <90 ml/min/1.73 m2, especially among children with spina bifida.
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Tasa de Filtración Glomerular , Hidronefrosis/diagnóstico por imagen , Hidronefrosis/etiología , Insuficiencia Renal Crónica/diagnóstico por imagen , Insuficiencia Renal Crónica/etiología , Disrafia Espinal/complicaciones , Ultrasonografía/métodos , Adolescente , Adulto , Biomarcadores/sangre , Niño , Preescolar , Cistatina C/sangre , Femenino , Humanos , Lactante , Masculino , Estudios RetrospectivosRESUMEN
OBJECTIVE: To assess the prevalence of therapy-related kidney outcomes in survivors of Wilms tumor (WT). STUDY DESIGN: This prospective cohort study included survivors of WT who were ≥5 years old and ≥1 year from completing therapy, excluding those with preexisting hypertension, prior dialysis, or kidney transplant. Participants completed 24-hour ambulatory blood pressure monitoring (ABPM). Abnormal blood pressure (BP) was defined as ≥90th percentile. Masked hypertension was defined as having normal office BP and abnormal ABPM findings. Urine was analyzed for kidney injury molecule-1, interleukin-18, epidermal growth factor, albumin, and creatinine. The estimated glomerular filtration rate (eGFR) was calculated using the bedside chronic kidney disease in children equation. Recent kidney ultrasound examinations and echocardiograms were reviewed for contralateral kidney size and left ventricular hypertrophy, respectively. Clinical follow-up data were collected for approximately 2 years after study enrollment. RESULTS: Thirty-two participants (median age, 13.6 years [IQR, 10.5-16.3 years]; 75% stage 3 or higher WT) were evaluated at a median of 8.7 years (IQR, 6.5-10.8 years) after therapy; 29 participants underwent unilateral radical nephrectomy, 2 bilateral partial nephrectomy, and 1 radical and contralateral partial nephrectomy. In this cohort, 72% received kidney radiotherapy and 75% received doxorubicin. Recent median eGFR was 95.6 mL/min/1.73 m2 (IQR, 84.6-114.0; 11 [34%] had an eGFR of <90 mL/min/1.73 m2). Abnormal ABPM results were found in 22 of 29 participants (76%), masked hypertension in 10 of 29 (34%), and microalbuminuria in 2 of 32 (6%). Of the 32 participants, 22 (69%) had abnormal epidermal growth factor; few had abnormal kidney injury molecule-1 or interleukin-18. Seven participants with previous unilateral nephrectomy lacked compensatory contralateral kidney hypertrophy. None had left ventricular hypertrophy. CONCLUSIONS: In survivors of WT, adverse kidney outcomes were common and should be closely monitored.
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Hipertensión/epidemiología , Enfermedades Renales/epidemiología , Neoplasias Renales/cirugía , Nefrectomía , Complicaciones Posoperatorias/epidemiología , Tumor de Wilms/cirugía , Adolescente , Supervivientes de Cáncer , Niño , Estudios de Cohortes , Femenino , Humanos , Masculino , Nefrectomía/métodos , Estudios Prospectivos , Adulto JovenRESUMEN
PURPOSE: To emphasize the burden that chronic kidney disease (CKD) and its complications place on overall health and well-being over the lifetime in individuals with congenital and acquired urinary tract abnormalities. METHODS: Topic-based literature review was performed and professional opinion was obtained to describe the scope of medical challenges faced by both teens and adults and their health care providers in the context of congenital and acquired urinary tract abnormalities. RESULTS: Challenges include accurate assessment of glomerular filtration rate; engaging for consistent surveillance of blood pressure, proteinuria, and medical complications of CKD that increase the risk of progression to end-stage renal disease and affect general health; achieving early referral to nephrology for better outcomes; managing renal complications within the unique limitations of lower urinary tract function; treating upper tract urolithiasis in the atypical urinary tract; and preparing for successful renal transplant. CONCLUSION: In individuals with congenital or acquired abnormalities of the urinary tract, there is an inherent risk of CKD with its associated morbidity and increased mortality risk. Interplay between the upper and lower urinary tract impacts CKD progression. Collaborative management between urology and nephrology is highly recommended to address the unique challenges for each individual over the lifetime.
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Insuficiencia Renal Crónica/etiología , Insuficiencia Renal Crónica/terapia , Transición a la Atención de Adultos , Anomalías Urogenitales/complicaciones , Anomalías Urogenitales/terapia , Adolescente , Humanos , Insuficiencia Renal Crónica/diagnóstico , Adulto JovenRESUMEN
PURPOSE: Chronic kidney disease affects 25% to 50% of patients with spina bifida. Guidelines recommend kidney function surveillance in these patients but practice patterns are unknown. Variations in kidney function surveillance were assessed in patients with spina bifida based on the hypothesis that the treating clinic and spina bifida type would be associated with kidney function surveillance. MATERIALS AND METHODS: A retrospective cohort study was conducted of U.S. patients in the National Spina Bifida Patient Registry from 2013 to 2018. Followup was anchored at the 2013 visit. Participants with either an outcome event within 2 years of followup or more than 2 years of followup without an outcome event were included. Primary outcome was kidney function surveillance, defined as at least 1 renal ultrasound and serum creatinine within 2 years of followup. Primary exposures were clinic and spina bifida type, which were analyzed with covariates including sociodemographic and clinical characteristics in logistic regression models for their association with the outcome. Sensitivity analyses were performed using different kidney function surveillance definitions. RESULTS: Of 8,351 patients 5,445 were included with a median followup of 3.0 years. Across 23 treating clinics kidney function surveillance rates averaged 62% (range 6% to 100%). In multivariable models kidney function surveillance was associated with treating clinic, younger patient age, functional lesion level, nonambulatory status and prior bladder augmentation. Treating clinic remained a significant predictor of kidney function surveillance in all sensitivity analyses. CONCLUSIONS: Within the National Spina Bifida Patient Registry wide variation exists in practice of kidney function surveillance across treating clinics despite adjustment for key patient characteristics.
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Pruebas de Función Renal , Vigilancia de la Población , Disrafia Espinal/fisiopatología , Adolescente , Adulto , Niño , Preescolar , Femenino , Humanos , Lactante , Masculino , Sistema de Registros , Estudios Retrospectivos , Estados UnidosRESUMEN
OBJECTIVE: To determine if there are distinct developmental trajectories of medical responsibility in youth with spina bifida (SB) across ages 8-17 years and to identify condition-related, parental, and family systems predictors of membership in these trajectory groups. METHODS: Participants were 140 youth with SB and their parents who participated in four waves of a longitudinal study across 6 years (ages 8-15 years at Time 1). Multi-method (questionnaires and observed family interactions) and multi-respondent assessments were conducted during home visits. RESULTS: Findings revealed that there were two distinct developmental trajectories that characterized this sample, with one being labeled "high increasing" (two thirds of the sample) and one labeled "low increasing" (one third of the sample). Most predictor variables were significantly associated with trajectory group membership, with the exception of ethnicity, SES, and measures of conflict. When all significant univariate predictors were included in the same model, only intelligence quotient (IQ), family stress, and gender were retained as significant. CONCLUSIONS: Most youth exhibited relatively rapid increases in responsibility over the course of late childhood and adolescence, but there was a smaller portion of the sample that did not exhibit this type of developmental trajectory. The magnitude of the IQ effect on group differentiation appeared to attenuate the effects of most other predictors. It will be important for clinicians working with youth with SB to recognize that the transfer of medical responsibility from parent to child cannot be expected to unfold in the same manner for all families of youth with SB.
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Disrafia Espinal , Adolescente , Niño , Familia , Humanos , Estudios Longitudinales , Padres , Conducta SocialRESUMEN
AIMS: Current estimated glomerular filtration rate (eGFR) equations may be inaccurate in patients with spina bifida (SB) because of reduced muscle mass and stature. Cross-sectional and longitudinal variability of eGFR were analyzed in these patients across multiple equations, hypothesizing greater variability in creatinine-based than cystatin-C (Cys-C)-based equations. METHODS: This retrospective cohort study included children (age, 1-17.9 years) and adults (≥18 years) with SB from 2002-2017 at a large SB clinic. Those without all data needed to calculate eGFR were excluded. Four pediatric and three adult eGFR equations were compared for cross-sectional outcomes of eGFR and elevated office blood pressures using chronic kidney disease (CKD) stage classification, and for longitudinal outcome of eGFR slope over time using covariance pattern models accounting for repeated measures. RESULTS: One hundred and eighty two children and 75 adults had greater than or equal to 1 set of data measurements; 118 and 52, respectively, had greater than or equal to 2 sets. The pediatric bedside Schwartz equation had the highest median eGFR and coefficient of variation. CKD stage classification by eGFR showed large differences across equations in children, with rates of eGFR < 60 and <90 ml/min/1.73 m2 ranging from 2%-9% and 5%-69%, respectively. Only one equation showed a significant inverse association between eGFR and blood pressure. Longitudinally, eGFR slopes over time were different across pediatric equations (P < .001) but not adult equations. The bedside Schwartz equation had a positive eGFR slope; the other Cys-C-containing equations had negative slopes. CONCLUSIONS: Creatinine-based equations in children with SB vary considerably from cystatin-C-containing equations in calculating both single point-in-time eGFR values and eGFR trends over time.
Asunto(s)
Presión Sanguínea/fisiología , Tasa de Filtración Glomerular/fisiología , Riñón/fisiopatología , Insuficiencia Renal Crónica/etiología , Disrafia Espinal/fisiopatología , Adolescente , Niño , Preescolar , Estudios Transversales , Femenino , Humanos , Lactante , Pruebas de Función Renal , Masculino , Insuficiencia Renal Crónica/fisiopatología , Estudios Retrospectivos , Disrafia Espinal/complicacionesRESUMEN
PURPOSE: We determined the association between urology consultation and emergency department revisits for children with urinary stones. MATERIALS AND METHODS: This retrospective cohort study included patients 18 years old or younger who presented to an emergency department in South Carolina with a urinary stone from 1997 to 2015. The primary exposure was urology consultation during the index emergency department visit. The primary outcome was a stone related emergency department revisit occurring within 180 days of discharge from an index emergency department visit. Secondary outcomes included computerized tomography use, inpatient admission and emergent surgery. RESULTS: Of 5,642 index emergency department visits for acute urinary stones 11% resulted in at least 1 stone related emergency department revisit within 180 days. Of revisits 59% occurred within 30 days of discharge and 39% were due to pain. The odds of emergency department revisit were highest within the first 48 hours of discharge home (OR 22.6, 95% CI 18.0 to 28.5) and rapidly decreased thereafter. Urology consultation was associated with a 37% lower adjusted odds of emergency department revisit (OR 0.63, 95% CI 0.44 to 0.90) and 68% lower odds of computerized tomography use across all emergency department visits (OR 0.32, 95% CI 0.15 to 0.69). Among patients who revisited the emergency department the frequency of pain complaints was 27% in those with a urological consultation at the index visit and 39% in those without. CONCLUSIONS: Urology consultation was associated with decreased emergency department revisits and computerized tomography use in pediatric patients with urinary stones. Future studies should identify patients who benefit most from urology consultation and ascertain processes of care that decrease emergency department revisits among high risk patients.
Asunto(s)
Servicio de Urgencia en Hospital/estadística & datos numéricos , Utilización de Instalaciones y Servicios/estadística & datos numéricos , Derivación y Consulta/estadística & datos numéricos , Cálculos Urinarios/diagnóstico , Cálculos Urinarios/terapia , Adolescente , Niño , Preescolar , Femenino , Hospitalización/estadística & datos numéricos , Humanos , Lactante , Recién Nacido , Masculino , Estudios Retrospectivos , South Carolina , Tomografía Computarizada por Rayos X/estadística & datos numéricosRESUMEN
PURPOSE: Results following distal hypospadias repair are favorable. Grouping proximal and distal hypospadias repair artificially increases the perceived success rate of proximal hypospadias. We identified our complication rate of proximal hypospadias repair and hypothesized a higher complication rate for 1-stage repair. MATERIALS AND METHODS: We retrospectively reviewed the records of consecutive boys who underwent proximal hypospadias from 2007 to 2014. Proximal hypospadias was defined as a urethral meatus location at or more proximal than the penoscrotal junction after penile degloving. We further stratified boys into those with planned 1-stage vs 2-stage repair. Univariate and Cox regression analyses were performed to assess associations with covariates and compare time to the first complication, respectively. RESULTS: A total of 167 boys met study inclusion criteria. Median followup was 31.7 months for 1-stage repair in 86 patients and staged repair in 81. The overall complication rate was 56%. Complications developed in 53 of 86 1-stage (62%) vs 40 of 81 staged (49%) repairs (p = 0.11). The number of unplanned procedures per patient was higher in the 1-stage than in the staged group (0.99 vs 0.69, p = 0.06), as was the number of patients who had at least 2 complications (29 of 86 or 33% vs 13 of 81 or 16%, p = 0.03). Cox regression showed no difference in time to the first complication for staged compared to 1-stage repair (HR 0.77, 95% CI 0.43-1.39). CONCLUSIONS: Our 56% complication rate of proximal hypospadias warrants further long-term patient followup. More patients in the 1-stage group experienced at least 2 complications. However, when complications developed, they developed no differently in the 2 groups.