Last data update: May 13, 2024. (Total: 46773 publications since 2009)
Records 1-7 (of 7 Records) |
Query Trace: Schechter MS[original query] |
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Variation in surgical management of neurogenic bowel among centers participating in National Spina Bifida Patient Registry
Routh JC , Joseph DB , Liu T , Schechter MS , Thibadeau JK , Chad Wallis M , Ward EA , Wiener JS . J Pediatr Rehabil Med 2017 10 303-312 PURPOSE: Optimal management of neurogenic bowel in patients with spina bifida (SB) remains controversial. Surgical interventions may be utilized to treat constipation and provide fecal continence, but their use may vary among SB treatment centers. METHODS: We queried the National Spina Bifida Patient Registry (NSBPR) to identify patients who underwent surgical interventions for neurogenic bowel. We abstracted demographic characteristics, SB type, functional level, concurrent bladder surgery, mobility, and NSBPR clinics to determine whether any of these factors were associated with interventions for management of neurogenic bowel. Multivariable logistic regression with adjustment for selection bias was performed. RESULTS: We identified 5,528 patients with SB enrolled in the 2009-14 NSBPR. Of these, 1,088 (19.7%) underwent procedures for neurogenic bowel, including 957 (17.3%) ACE/cecostomy tube and 155 (2.8%) ileostomy/colostomy patients. Procedures were more likely in patients who were older, white, non-ambulatory, with higher-level lesion, with myelomeningocele lesion, with private health insurance (all p< 0.001), and female (p= 0.006). On multivariable analysis, NSBPR clinic, older age (both p< 0.001), race (p= 0.002), mobility status (p= 0.011), higher lesion level (p< 0.001), private insurance (p= 0.002) and female sex (p= 0.015) were associated with increased odds of surgery. CONCLUSIONS: There is significant variation in rates of procedures to manage neurogenic bowel among NSBPR clinics. In addition to SB-related factors such as mobility status and lesion type/level, non-SB-related factors such as patient age, sex, race and treating center are also associated with the likelihood of undergoing neurogenic bowel intervention. |
Bladder reconstruction rates differ among centers participating in National Spina Bifida Patient Registry
Routh JC , Joseph DB , Liu T , Schechter MS , Thibadeau JK , Wallis MC , Ward EA , Wiener JS . J Urol 2017 199 (1) 268-273 PURPOSE: We performed an exploratory analysis of data from the National Spina Bifida Patient Registry (NSBPR) to assess variation in the frequency of bladder reconstruction surgeries among NSBPR centers. METHODS: We queried the 2009-2014 NSBPR to identify patients who had ever undergone bladder reconstruction surgeries. We evaluated demographic characteristics, SB type, functional level, mobility, and NSBPR center to determine whether any of these factors were associated with reconstructive surgery rates. Multivariable logistic regression was used to simultaneously adjust for the impact of these factors. RESULTS: We identified 5,528 patients with SB enrolled in the NSBPR. Of these, 1,129 (20.4%) underwent bladder reconstruction (703 augmentation, 382 continent catheterizable channel, 189 bladder outlet procedure). Surgery patients were more likely to be older, female, non-Hispanic white, higher lesion level, myelomeningocele diagnosis, non-ambulators (all p<0.001) and non-privately insured (p=0.018). Bladder reconstruction surgery rates varied among NSBPR centers (range 12.1-37.9%, p<0.001). After correcting for known confounders, NSBPR center, SB type, mobility, gender and age (all p<0.001) were significant predictors of surgical intervention. Race (p=0.19) and insurance status (p=0.11) were not associated with surgical intervention. CONCLUSIONS: There is significant variation in rates of bladder reconstruction surgery among NSBPR centers. In addition to clinical factors such as mobility status, lesion type, and lesion level, non-clinical factors such as patient age, gender and treating center are also associated with the likelihood of an individual undergoing bladder reconstruction. |
Design and Methodological Considerations of the Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida
Routh JC , Cheng EY , Austin JC , Baum MA , Gargollo PC , Grady RW , Herron AR , Kim SS , King SJ , Koh CJ , Paramsothy P , Raman L , Schechter MS , Smith KA , Tanaka ST , Thibadeau JK , Walker WO , Wallis MC , Wiener JS , Joseph DB . J Urol 2016 196 (6) 1728-1734 INTRODUCTION: Care of children with spina bifida (SB) has significantly advanced over the last half-century, resulting in gains in longevity and quality of life for affected children and caregivers. Bladder dysfunction is the norm in SB patients and may result in infection, renal scarring, and chronic kidney disease. However, the optimal urologic management for SB-related bladder dysfunction is unknown. METHODS: In 2012, Centers for Disease Control and Prevention (CDC) convened a working group composed of pediatric urologists, nephrologists, epidemiologists, methodologists, community advocates, and CDC personnel to develop a protocol to optimize urologic care of children with SB from the newborn period through 5 years of age. RESULTS: An iterative quality-improvement protocol was selected; in this model, participating institutions agree to prospectively treat all newborns with SB using a single consensus-based protocol. Over the course of the 5-year study period, study outcomes are routinely assessed and the protocol adjusted as needed in order to optimize patient and process outcomes. Primary study outcomes include urinary tract infections (UTI), renal scarring, renal function, and bladder characteristics. The protocol specifies the timing and use of testing (e.g., ultrasonography, urodynamics) and interventions (e.g., intermittent catheterization, prophylactic antibiotics, antimuscarinic medications). Starting in 2014, the CDC began funding nine study sites to implement and evaluate the protocol. CONCLUSIONS: The CDC Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida began accruing patients in 2015. Assessment in the first 5 years will focus on UTIs, renal function, renal scarring, and clinical process improvements. |
Sociodemographic attributes and spina bifida outcomes
Schechter MS , Liu T , Soe M , Swanson M , Ward E , Thibadeau J . Pediatrics 2015 135 (4) e957-64 BACKGROUND: A National Spina Bifida Patient Registry (NSBPR) was begun in 2009 to help understand the natural history of spina bifida (SB) and the effects of treatments provided by SB clinics. We used the NSBPR to explore the relationship of sociodemographic characteristics with SB outcomes. METHODS: Using NSBPR data collected in 2009 to 2012, we examined the unadjusted association between demographic characteristics and 4 SB outcomes: bowel continence, bladder continence, mobility, and presence of pressure sores. We then developed multivariable logistic models to explore these relationships while controlling for SB clinic, SB type, and level of lesion. RESULTS: Data were available on 2054 patients <22 years of age from 10 SB clinics. In the multivariable models, older age groups were more likely to have continence and pressure sores and less likely to be community ambulatory. Males and patients without private insurance were less likely to be continent and community ambulatory. Non-Hispanic blacks were less likely to be continent. Level of lesion was associated with all outcomes; SB type was associated with all but pressure sores; and all outcomes except community ambulation showed significant variation across clinic sites. CONCLUSIONS: Sociodemographic attributes are associated with SB outcomes. In particular, males, non-Hispanic blacks, and patients without private insurance have less favorable outcomes, and age has an impact as well. These characteristics need to be considered by clinicians who care for this patient population and factored into case-mix adjustment when evaluating variation in clinical and functional outcomes among different SB clinics. |
The National Spina Bifida Patient Registry: profile of a large cohort of participants from the first 10 clinics
Sawin KJ , Liu T , Ward E , Thibadeau J , Schechter MS , Soe MM , Walker W . J Pediatr 2014 166 (2) 444-50 e1 OBJECTIVE: To use data from the US National Spina Bifida Patient Registry (NSBPR) to describe variations in Contexts of Care, Processes of Care, and Health Outcomes among individuals with spina bifida (SB) receiving care in 10 clinics. STUDY DESIGN: Reported here are baseline cross-sectional data representing the first visit of 2172 participants from 10 specialized, multidisciplinary SB clinics participating in the NSBPR. We used descriptive statistics, the Fisher exact test, chi2 test, and Wilcoxon rank-sum test to examine the data. RESULTS: The mean age was 10.1 (SD 8.1) years with slightly more female subjects (52.5%). The majority was white (63.4%) and relied upon public insurance (53.5%). One-third had sacral lesions, 44.8% had mid-low lumbar lesions, and 24.9% had high lumbar and thoracic lesions. The most common surgery was ventricular shunt placement (65.7%). The most common bladder-management technique among those with bladder impairment was intermittent catheterization (69.0%). Almost 14% experienced a pressure ulcer in the last year. Of those ages 5 years or older with bowel or bladder impairments, almost 30% were continent of stool; a similar percentage was continent of urine. Most variables were associated with type of SB diagnosis. CONCLUSION: The NSBPR provides a cross section of a predominantly pediatric population of patients followed in specialized SB programs. There were wide variations in the variables studied and major differences in Context of Care, Processes of Care, and Health Outcomes by type of SB. Such wide variation and the differences by type of SB should be considered in future analyses of outcomes. |
Testing the feasibility of a National Spina Bifida Patient Registry
Thibadeau JK , Ward EA , Soe MM , Liu T , Swanson M , Sawin KJ , Freeman KA , Castillo H , Rauen K , Schechter MS . Birth Defects Res A Clin Mol Teratol 2012 97 (1) 36-41 BACKGROUND: The purpose of this study was to describe the development and early implementation of a national spina bifida (SB) patient registry, the goal of which is to monitor the health status, clinical care, and outcomes of people with SB by collecting and analyzing patient data from comprehensive SB clinics. METHODS: Using a web-based, SB-specific electronic medical record, 10 SB clinics collected health-related information for patients diagnosed with myelomeningocele, lipomyelomeningocele, fatty filum, or meningocele. This information was compiled and de-identified for transmission to the Centers for Disease Control and Prevention (CDC) for quality control and analysis. RESULTS: A total of 2070 patients were enrolled from 2009 through 2011: 84.9% were younger than 18 years of age; 1095 were women; 64.2% were non-Hispanic white; 6.5% were non-Hispanic black or African American; and 24.2% were Hispanic or Latino. Myelomeningocele was the most common diagnosis (81.5%). CONCLUSIONS: The creation of a National Spina Bifida Patient Registry partnership between the CDC and SB clinics has been feasible. Through planned longitudinal data collection and the inclusion of additional clinics, the data generated by the registry will become more robust and representative of the population of patients attending SB clinics in the United States and will allow for the investigation of patient outcomes. (Birth Defects Research (Part A), 2012. (c) 2012 Wiley Periodicals, Inc.) |
Healthcare expenditures for privately insured people with cystic fibrosis
Ouyang L , Grosse SD , Amendah DD , Schechter MS . Pediatr Pulmonol 2009 44 (10) 989-96 With improved survival and new therapies for people with cystic fibrosis (CF), updated information on medical care expenditures for those individuals is needed. We estimated medical care expenditures, including both insurance reimbursements and patient out-of-pocket expenses, for privately insured people with CF and investigated how those expenditures varied with certain complications of CF. From a private insurance claims database of people covered by health plans associated with large corporate employers, we identified people with CF who were currently receiving medical care for the disorder and characterized their medical expenditures during the period 2004-2006. We selected a matching group of people who did not have CF based on age, sex, and geographic area, and calculated incremental expenditures associated with CF. We also examined the effect of age and certain complications of CF on these expenditures. The annual medical care expenditure for a person with actively managed CF averaged $48,098 in 2006 dollars, which was 22 times higher than for a person without CF. This ratio is high relative to other chronic disorders. Outpatient prescription medications made up the largest component of total expenditures for people with CF (39%). Those who were recorded in claims data as having a liver or lung transplant, malnutrition, diabetes, or a chronic Pseudomonas aeruginosa pulmonary infection incurred much higher expenditures than people without these conditions. People with CF will incur high medical expenditures throughout their lifespan. These findings will assist in the development of economic evaluations of future CF screening and management initiatives. Pediatr Pulmonol. 2009; 44:989-996. (c)2009 Wiley-Liss, Inc. |
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