Browsing by Author "Wiener, John S"

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    Age-Specific Probability of 4 Major Health Outcomes in Children with Spina Bifida.
    (Journal of developmental and behavioral pediatrics : JDBP, 2023-10) Gilbertson, Kendra E; Liu, Tiebin; Wiener, John S; Walker, William O; Smith, Kathryn; Castillo, Jonathan; Castillo, Heidi; Wilson, Pamela; Peterson, Paula; Clayton, Gerald H; Valdez, Rodolfo

    Objective

    This study aimed to estimate the age-specific probability of 4 health outcomes in a large registry of individuals with spina bifida (SB).

    Methods

    The association between age and 4 health outcomes was examined in individuals with myelomeningocele (MMC, n = 5627) and non-myelomeningocele (NMMC, n = 1442) from the National Spina Bifida Patient Registry. Sixteen age categories were created, 1 for each year between the ages of 5 and 19 years and 1 for those aged 20 years or older. Generalized linear models were used to calculate the adjusted probability and 95% prediction intervals of each outcome for each age category, adjusting for sex and race/ethnicity.

    Results

    For the MMC and NMMC groups, the adjusted coefficients for the correlation between age and the probability of each outcome were -0.933 and -0.657 for bladder incontinence, -0.922 and -0.773 for bowel incontinence, 0.942 and 0.382 for skin breakdown, and 0.809 and 0.619 for lack of ambulation, respectively.

    Conclusion

    In individuals with SB, age is inversely associated with the probability of bladder and bowel incontinence and directly associated with the probability of skin breakdown and lack of ambulation. The estimated age-specific probabilities of each outcome can help SB clinicians estimate the expected proportion of patients with the outcome at specific ages and explain the probability of the occurrence of these outcomes to patients and their families.
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    Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study.
    (Journal of pediatric rehabilitation medicine, 2023-12) Szymanski, Konrad M; Adams, Cyrus M; Alkawaldeh, Mohammad Y; Austin, Paul F; Bowman, Robin M; Castillo, Heidi; Castillo, Jonathan; Chu, David I; Estrada, Carlos R; Fascelli, Michele; Frimberger, Dominic C; Gargollo, Patricio C; Hamdan, Dawud G; Hecht, Sarah L; Hopson, Betsy; Husmann, Douglas A; Jacobs, Micah A; MacNeily, Andrew E; McLeod, Daryl J; Metcalfe, Peter D; Meyer, Theresa; Misseri, Rosalia; O'Neil, Joseph; Rensing, Adam J; Routh, Jonathan C; Rove, Kyle O; Sawin, Kathleen J; Schlomer, Bruce J; Shamblin, Isaac; Sherlock, Rebecca L; Slobodov, Gennady; Stout, Jennifer; Tanaka, Stacy T; Weiss, Dana A; Wiener, John S; Wood, Hadley M; Yerkes, Elizabeth B; Blount, Jeffrey

    Purpose

    This study aimed to analyze organ system-based causes and non-organ system-based mechanisms of death (COD, MOD) in people with myelomeningocele (MMC), comparing urological to other COD.

    Methods

    A retrospective review was performed of 16 institutions in Canada/United States of non-random convenience sample of people with MMC (born > = 1972) using non-parametric statistics.

    Results

    Of 293 deaths (89% shunted hydrocephalus), 12% occurred in infancy, 35% in childhood, and 53% in adulthood (documented COD: 74%). For 261 shunted individuals, leading COD were neurological (21%) and pulmonary (17%), and leading MOD were infections (34%, including shunt infections: 4%) and non-infectious shunt malfunctions (14%). For 32 unshunted individuals, leading COD were pulmonary (34%) and cardiovascular (13%), and leading MOD were infections (38%) and non-infectious pulmonary (16%). COD and MOD varied by shunt status and age (p < = 0.04), not ambulation or birthyear (p > = 0.16). Urology-related deaths (urosepsis, renal failure, hematuria, bladder perforation/cancer: 10%) were more likely in females (p = 0.01), independent of age, shunt, or ambulatory status (p > = 0.40). COD/MOD were independent of bladder augmentation (p= >0.11). Unexplained deaths while asleep (4%) were independent of age, shunt status, and epilepsy (p >= 0.47).

    Conclusion

    COD varied by shunt status. Leading MOD were infectious. Urology-related deaths (10%) were independent of shunt status; 26% of COD were unknown. Life-long multidisciplinary care and accurate mortality documentation are needed.
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    Challenges in pediatric urologic practice: a lifelong view.
    (World journal of urology, 2020-04-23) Wiener, John S; Huck, Nina; Blais, Anne-Sophie; Rickard, Mandy; Lorenzo, Armando; Di Carlo, Heather N McCaffrey; Mueller, Margaret G; Stein, Raimund
    The role of the pediatric urologic surgeon does not end with initial reconstructive surgery. Many of the congenital anomalies encountered require multiple staged operations while others may not involve further surgery but require a life-long follow-up and often revisions. Management of most of these disorders must extend into and through adolescence before transitioning these patients to adult colleagues. The primary goal of management of all congenital uropathies is protection and/or reversal of renal insult. For posterior urethral valves, in particular, avoidance of end-stage renal failure may not be possible in severe cases due to the congenital nephropathy but usually can be prolonged. Likewise, prevention or minimization of urinary tract infections is important for overall health and eventual renal function. Attainment of urinary continence is an important goal for most with a proven positive impact on quality of life; however, measures to achieve that goal can require significant efforts for those with neuropathic bladder dysfunction, obstructive uropathies, and bladder exstrophy. A particular challenge is maximizing future self-esteem, sexual function, and reproductive potential for those with genital anomalies such as hypospadias, the bladder exstrophy epispadias complex, prune belly syndrome, and Mullerian anomalies. Few endeavors are rewarding as working with children and their families throughout childhood and adolescence to help them attain these goals, and modern advances have enhanced our ability to get them to adulthood in better physical and mental health than ever before.
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    Delayed presentation of urethrocutaneous fistulae after hypospadias repair.
    (Journal of pediatric surgery, 2020-01-29) Johnston, Ashley W; Jibara, Ghalib A; Purves, J Todd; Routh, Jonathan C; Wiener, John S
    BACKGROUND:Delayed urethrocutaneous fistula (UCF) presentation after hypospadias repair is rarely reported. The aim of this study is to report our experience with delayed UCF presenting more than 5 years after hypospadias repair. METHODS:We conducted a retrospective review of patients who underwent UCF repair (CPT codes 54,340 and 54,344) at our institution between 1997 and 2017. Delayed UCF presentation was defined as a single normal urinary stream after initial hypospadias repair and subsequent presentation of a UCF/s urinary stream more than 5 years after initial hypospadias or UCF repair. Demographic and clinical data were reviewed after approval from our institutional review committee. RESULTS:We identified 12 patients with delayed UCF. The mean age at hypospadias repair was 12.3 months (Range 6-32). The mean time to delayed UCF presentation was 11.5 years (Range 7.1-15.8). Four patients with delayed UCF (33.3%) required additional surgery for UCF recurrence with a mean time to recurrence of 2.2 years (Range < 1-5.6). CONCLUSIONS:Delayed UCF presentation can occur more than 15 years after initial repair. Pubertal penile skin changes and increased genital awareness in older children may be contributing factors as all but one presented at age 10 years or older. LEVEL OF EVIDENCE:III.
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    Expert Consensus on Pediatric Urodynamics Reporting Using Modified Delphi Technique.
    (The Journal of urology, 2024-05) Meier, Kristen M; Mata, Claudia; Kaar, Jill L; Rensing, Adam J; Dudley, Anne G; Carrasco, Alonso; Drzewiecki, Beth A; VanderBrink, Brian A; Streur, Courtney S; Bagli, Darius J; Chalmers, David J; Wilcox, Duncan T; Yerkes, Elizabeth B; Lau, Glen A; Vricella, Gino J; Hecht, Sarah L; Copp, Hillary L; Pohl, Hans G; Franco, Israel; Ahn, Jennifer; Wiener, John S; Singer, Jennifer S; Long, Christopher J; Keays, Melise A; Daugherty, Michael R; Fuchs, Molly E; Austin, Paul F; Wu, Charlotte Q; Zee, Rebecca S; Misseri, Rosalia; Tanaka, Stacy T; Bauer, Stuart B; Rove, Kyle O
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    Parental Preferences for Vesicoureteral Reflux Treatment: a Crowd-sourced, Best-worst Scaling Study.
    (Urology, 2019-03-13) Dionise, Zachary R; Gonzalez, Juan Marcos; Garcia-Roig, Michael L; Kirsch, Andrew J; Scales, Charles D; Wiener, John S; Purves, J Todd; Routh, Jonathan C
    OBJECTIVE:To quantitatively evaluate parental preferences for the various treatments for vesicoureteral reflux using crowd-sourced best-worst scaling, a novel technique in urologic preference estimation. METHODS:Preference data were collected from a community sample of parents via two best-worst scaling survey instruments published to Amazon's Mechanical Turk online community. Attributes and attribute levels were selected following extensive review of the reflux literature. Respondents completed an object case best-worst scaling exercise to prioritize general aspects of reflux treatments and multi-profile case best-worst scaling to elicit their preferences for the specific differences in reflux treatments. Data were analyzed using multinomial logistic regression. Results from the object-case provided probability scaled values (PSV) that reflected the order of importance of attributes. RESULTS:We analyzed data for 248 and 228 respondents for object and multi-profile case BWS, respectively. When prioritizing general aspects of reflux treatment, effectiveness (PSV=20.37), risk of future urinary tract infection (PSV=14.85) and complication rate (PSV=14.55) were most important to parents. Societal cost (PSV=1.41), length of hospitalization (PSV=1.09), and cosmesis (PSV=0.91) were least important. Parents perceived no difference in preference for the cosmetic outcome of open versus minimally invasive surgery (p=0.791). Bundling attribute preference weights, parents in our study would choose open surgery 74.9% of the time. CONCLUSIONS:High treatment effectiveness was the most important and preferred attribute to parents. Alternatively, cost and cosmesis were among the least important. Our findings serve to inform shared parent-physician decision-making for vesicoureteral reflux.
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    Patterns of inpatient care for prostate cancer in men with spina bifida.
    (Disability and health journal, 2020-04) Johnston, Ashley W; Wolf, Steven; Alkazemi, Muhammad H; Pomann, Gina-Maria; Wood, Hadley; Wiener, John S; Routh, Jonathan C
    BACKGROUND:Advances in medical care have increased the long-term survival of patients with spina bifida. Despite this growing population, limited knowledge is available on age-related illnesses in adults with spina bifida, particularly prostate cancer for which there is no published data. OBJECTIVE:Our aim was to describe inpatient care for prostate cancer in men with spina bifida in the United States. METHODS:We performed a descriptive, retrospective study utilizing the 1998 to 2014 National Inpatient Sample from the Healthcare Cost and Utilization Project. Weights were applied to the sample to make national level inferences. We identified all adult encounters (≥18 years old) with prostate cancer and spina bifida. RESULTS:We identified 253 encounters (mean age 64.9 years). Most were Caucasian (67.5%) and had public insurance (61.6%). 44% of encounters included a major urologic procedure. 38.4% of encounters included prostatectomies, 28.3% included lymph node dissections, and 7.8% included cystectomies. Robotic surgery was performed in 9.4%. Mean length of stay was 5.6 days (95% CI: 3.7, 7.5). The average total cost was $14,074 (95% CI: $8990.3, $19,158.6). CONCLUSIONS:In this first-ever exploration of inpatient care for prostate cancer in men with spina bifida, we found that length of stay and total costs were higher in men with spina bifida. Almost half of encounters included a prostatectomy, cystectomy, and/or lymph node dissection. More detailed investigations are necessary to assess comparative treatment outcomes and complications, including prevalence and mortality rates of prostate cancer among adult men with SB.
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    Pediatric Neurogenic Bladder and Bowel Dysfunction: Will My Child Ever Be out of Diapers?
    (European urology focus, 2020-01-22) Johnston, Ashley W; Wiener, John S; Todd Purves, J
    CONTEXT:Managing patient and parent expectations regarding urinary and fecal continence is important with congenital conditions that produce neurogenic bladder and bowel dysfunction. Physicians need to be aware of common treatment algorithms and expected outcomes to best counsel these families. OBJECTIVE:To systematically evaluate evidence regarding the utilization and success of various modalities in achieving continence, as well as related outcomes, in children with neurogenic bladder and bowel dysfunction. EVIDENCE ACQUISITION:We performed a systematic review of the literature in PubMed/Medline in August 2019. A total of 114 publications were included in the analysis, including 49 for bladder management and 65 for bowel management. EVIDENCE SYNTHESIS:Children with neurogenic bladder conditions achieved urinary continence 50% of the time, including 44% of children treated with nonsurgical methods and 64% with surgical interventions. Patients with neurogenic bowel problems achieved fecal continence 75% of the time, including 78% of patients treated with nonsurgical methods and 73% with surgical treatment. Surgical complications and need for revisions were high in both categories. CONCLUSIONS:Approximately half of children with neurogenic bladder dysfunction will achieve urinary continence and about three-quarters of children with neurogenic bowel dysfunction will become fecally continent. Surgical intervention can be successful in patients refractory to nonsurgical management, but the high complication and revision rates support their use as second-line therapy. This is consistent with guidelines issued by the International Children's Continence Society. PATIENT SUMMARY:Approximately half of children with neurogenic bladder dysfunction will achieve urinary continence, and about three-quarters of children with neurogenic bowel dysfunction will become fecally continent. Most children can be managed without surgery. Patients who do not achieve continence with nonsurgical methods frequently have success with operative procedures, but complications and requirements for additional procedures must be expected.
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    Pediatric urologic oncology in the 21st century: where we stand and where we're headed.
    (Translational andrology and urology, 2020-10) Routh, Jonathan C; Cost, Nicholas G; Wiener, John S
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    Prevalence of sexual abuse and intimate partner violence in adults with spina bifida.
    (Disability and health journal, 2024-03) Johnston, Ashley W; Hensel, Devon J; Roth, Joshua D; Wiener, John S; Misseri, Rosalia; Szymanski, Konrad M

    Background

    People with disabilities and chronic medical conditions are known to be at higher risk of sexual abuse (SA) and intimate partner violence (IPV). People with spina bifida (SB) are vulnerable, but little is known about the prevalence of abuse in this population.

    Objective

    To evaluate the prevalence and risk factors of SA and IPV in adults with SB.

    Methods

    An anonymous international cross-sectional online survey of adults with SB asked about history of SA ("sexual contact that you did not want") and IPV ("hit, slapped, kicked, punched or hurt physically by a partner").

    Results

    Median age of the 405 participants (61% female) was 35 years. Most self-identified as heterosexual (85%) and were in a romantic relationship (66%). A total of 19% reported a history of SA (78% no SA, 3% preferred not to answer). SA was more frequently reported by women compared to men (27% vs. 5%, p < 0.001) and non-heterosexual adults compared to heterosexuals (41% vs. 15%, p < 0.001). Twelve percent reported a history of IPV (86% no IPV, 2% preferred not to answer). IPV was more frequently reported by women compared to men (14% vs. 9%, p = 0.02), non-heterosexuals compared to heterosexuals (26% vs. 10%, p = 0.002), and adults with a history of sexual activity versus those without (14% vs. 2%, p = 0.01).

    Conclusion

    People with SB are subjected to SA and IPV. Women and non-heterosexuals are at higher risk of both.
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    The Importance of Early Diagnosis and Management of Pediatric Neurogenic Bladder Dysfunction.
    (Research and reports in urology, 2021-01) Hobbs, K Tyler; Krischak, Madison; Tejwani, Rohit; Purves, J Todd; Wiener, John S; Routh, Jonathan C
    Neurogenic bladder dysfunction is a major source of urologic morbidity in children, especially in those with spina bifida (SB). Complications from progression of bladder dysfunction can include urinary tract infections (UTIs), urinary incontinence, upper tract deterioration, and renal dysfunction or failure. In these children, there has been a recent trend toward proactive rather than expectant management of neurogenic bladder. However, there is a lack of consensus on how to best achieve the three main goals of neurogenic bladder management: 1) preserving kidney function, 2) achieving continence (if desired by the family/individual), and 3) achieving social and functional urologic independence (if appropriate). Hence, our objective was to perform a narrative literature review to evaluate the approaches to diagnosis and management of pediatric neurogenic bladder dysfunction, with special focus on children with SB. The approach strategies vary across a spectrum, with a proactive strategy on one end of the spectrum and an expectant strategy at the other end. The proactive management strategy is characterized by early and frequent labs, imaging, and urodynamic (UDS) evaluation, with early initiation of clean intermittent catheterization (CIC) and proceeding with pharmacotherapy, or surgery if indicated. The expectant management strategy prioritizes surveillance labs and imaging prior to proceeding with invasive assessments and interventions such as UDS or pharmacotherapy. Both treatment strategies are currently utilized and data have historically been inconclusive in demonstrating efficacy of one regimen over the other. We performed a narrative literature evaluating proactive and expectant treatment strategies as they relate to diagnostics and management of Spina Bifida. From the available literature and our practice, a proactive strategy favors greater benefit in preventative management and may decrease risk of renal dysfunction compared with expectant management.
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