Last data update: Jan 27, 2025. (Total: 48650 publications since 2009)
Records 1-10 (of 10 Records) |
Query Trace: Thibadeau JK[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. |
Factors associated with the timeliness of postnatal surgical repair of spina bifida
Radcliff E , Cassell CH , Laditka SB , Thibadeau JK , Correia J , Grosse SD , Kirby RS . Childs Nerv Syst 2016 32 (8) 1479-87 PURPOSE: Clinical guidelines recommend repair of open spina bifida (SB) prenatally or within the first days of an infant's life. We examined maternal, infant, and health care system factors associated with time-to-repair among infants with postnatal repair. METHODS: This retrospective, statewide, population-based study examined infants with SB born in Florida 1998-2007, ascertained by the Florida Birth Defects Registry. We used procedure codes from hospital discharge records to identify the first recorded myelomeningocele repair (ICD-9 CM procedure code 03.52) among infants with birth hospitalizations. Using Poisson multivariable regression, we examined time-to-repair by hydrocephalus, SB type (isolated [no other coded major birth defect] versus non-isolated), and other selected factors. RESULTS: Of 199 infants with a recorded birth hospitalization and coded myelomeningocele repair, 87.9 % had hydrocephalus and 19.6 % had non-isolated SB. About 76.4 % of infants had repair by day 2 of life. In adjusted analyses, infants with hydrocephalus were more likely to have timely repair (adjusted prevalence ratio (aPR) = 1.48, 95 % confidence interval (CI) 1.02-2.14) than infants without hydrocephalus. SB type was not associated with repair timing. Infants born in lower level nursery care hospitals with were less likely to have timely repairs (aPR = 0.71, 95 % CI 0.52-0.98) than those born in higher level nursery care hospitals. CONCLUSIONS: Most infants with SB had surgical repair in the first 2 days of life. Lower level birth hospital nursery care was associated with later repairs. Prenatal diagnosis can facilitate planning for a birth hospital with higher level of nursery care, thus improving opportunities for timely repair. |
Inpatient and emergency room visits for adolescents and young adults with spina bifida living in South Carolina
Mann JR , Royer JA , Turk MA , McDermott S , Holland MM , Ozturk O , Hardin JW , Thibadeau JK . PM R 2014 7 (5) 499-511 OBJECTIVE: To compare emergency room (ER) and inpatient hospital (IP) use rates for people with spina bifida (SB) to peers without SB, when transition from pediatric to adult health care is likely to occur, and analyze those ER and IP rates by age, race, socioeconomic status, gender, and county type. DESIGN: A retrospective cohort study SETTING: Secondary data analysis in South Carolina PARTICIPANTS: We studied individuals who were between 15-24 years old and enrolled in the State Health Plan (SHP) or state Medicaid during the 2000 - 2010 study period. METHODS: Individuals with SB were identified using ICD-9 billing codes (741.0, 741.9) in SHP, Medicaid, and hospital uniform billing (UB) data. ER and IP encounters were identified using UB data. Multivariable Generalized Estimating Equation (GEE) Poisson models were estimated to compare rates of ER and IP use among the SB group to the comparison group. MAIN OUTCOME MEASUREMENTS: Total ER rate and IP rate, in addition to cause-specific rates for ambulatory care sensitive conditions (ACSC) and other condition categories. RESULTS: We found higher rates of ER and IP use in people with SB compared to the control group. Among individuals with SB, young adults (20-24 year olds) had higher rates of ER use due to all ACSC (p=.023), other ACSC (p=.04), and urinary tract infections (UTI; p=.002) compared to adolescents (15-19 year olds). CONCLUSIONS: Young adulthood is associated with increased ER use overall, as well as in specific condition categories (most notably UTI) in 15-24 year olds with SB. This association may be indicative of changing healthcare access as people with SB move from adolescent to adult health care, and/or physiologic changes during the age range studied. |
The natural history of spina bifida in children pilot project: research protocol
Alriksson-Schmidt AI , Thibadeau JK , Swanson ME , Marcus D , Carris KL , Siffel C , Ward E . JMIR Res Protoc 2013 2 (1) e2 BACKGROUND: Population-based empirical information to inform health care professionals working with children with spina bifida currently is lacking. Spina bifida is a highly complex condition that not only affects mobility but many additional aspects of life. We have developed a pilot project that focuses on a broad range of domains: surgeries, development and learning, nutrition and physical growth, mobility and functioning, general health, and family demographics. Specifically, we will: (1) explore the feasibility of identifying and recruiting participants using different recruitment sources, (2) test a multidisciplinary module to collect the data, (3) determine the utility of different methods of retrieving the data, and (4) summarize descriptive information on living with spina bifida. OBJECTIVE: The overall objective of the project was to provide information for a future multistate prospective study on the natural history of spina bifida. METHODS: Families with a child 3 to 6 years of age with a diagnosis of spina bifida were eligible for enrollment. Eligible families were identified through a US population-based tracking system for birth defects and from a local spina bifida clinic. RESULTS: This is an ongoing project with first results expected in 2013. CONCLUSIONS: This project, and the planned multistate follow-up project, will provide information both to health care professionals experienced in providing care to patients with spina bifida, and to those who have yet to work with this population. The long-term purpose of this project is to increase the knowledge about growing up with spina bifida and to guide health care practices by prospectively studying a cohort of children born with this condition. (JMIR Res Protoc 2013; 2(1): e2) doi:10.2196/resprot.2209 |
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.) |
Health risk behaviors among young adults with spina bifida
Soe MM , Swanson ME , Bolen JC , Thibadeau JK , Johnson N . Dev Med Child Neurol 2012 54 (11) 1057-64 AIM: Persons with spina bifida who adopt unhealthy lifestyles could be at increased risk of adverse health outcomes because the presence of spina bifida may magnify this risk. We estimated overall and age-specific prevalence of selected health risk behaviors (HRBs) in young people with spina bifida and examined the association between HRBs and depression. METHOD: We performed analyses on data obtained from individuals with spina bifida (n=130; mean age 23y SD 4y 5mo; 64 males, 66 females; 64% lumbosacral lesion; 77% with shunt) who participated in a population-based survey conducted by the Arkansas Spinal Cord Commission in 2005. RESULTS: Compared with national estimates, young people with spina bifida tend to eat less healthy diets, do less exercise, and engage in more sedentary activities. Respondents were less likely to use substances (alcohol, tobacco, illegal drugs), which peaked among 25 to 31 year olds. About 90% saw a doctor in the previous year. Nearly one half reported mild or major depressive symptoms. In the logistic regression analysis after controlling for potential confounders (age, sex, ethnic group, education, employment, marital status, living arrangement, level of lesion, presence of shunt, mobility, self-rated health and healthcare utilization), major depressive symptoms were associated with current alcohol drinking (adjusted odds ratio: 4.74; 95% CI 1.18-19.04). INTERPRETATION: Young adults with spina bifida exhibit unhealthy behaviors that continue into their late 20s. The findings highlight the need to increase awareness of their health risk profiles in the spina bifida community and show opportunities for mental health and health risk screening and counseling by healthcare providers. |
The National Spina Bifida Program transition initiative: the people, the plan, and the process
Thibadeau JK , Alriksson-Schmidt AI , Zabel TA . Pediatr Clin North Am 2010 57 (4) 903-10 This article outlines and summarizes the rationale and the working process that was undertaken by the National Spina Bifida Program to address the issues of transitioning throughout the life course for persons growing up with spina bifida. Their challenges include achieving independent living, vocational independence, community mobility, and participation in social activities, and health management. The creation, the underlying concepts, and the dissemination of the Life Course Model are described. |
Are adolescent girls with a physical disability at increased risk for sexual violence?
Alriksson-Schmidt AI , Armour BS , Thibadeau JK . J Sch Health 2010 80 (7) 361-7 BACKGROUND: The purpose of this study was to investigate whether US female adolescents who self-reported having a physical disability or long-term health problem were more likely to report having been physically forced to have sexual intercourse than US female adolescents without a physical disability or long-term health problem. METHODS: Using data from the 2005 U.S. National Youth Risk Behavior Survey (YRBS), we employed logistic regression analyses to estimate the association between physical disability (and other variables) and the risk for sexual violence among US high school girls. RESULTS: Female high school students who reported a physical disability or long-term health problem were more likely to report having been physically forced to have sexual intercourse than those who did not (19.6% vs 9.4%;chi(2) = 14.51, p = .003). Results from our multivariate analysis reveal that this association remained significant (adjusted odds ratio [AOR], 1.57; 95% confidence interval [CI], 1.10-2.23) after adjusting for certain demographic characteristics, physical health problems, behavioral health risks, and violent conduct. CONCLUSIONS: Our findings suggest that adolescent girls in the United States with a physical disability or long-term health problem may be at increased risk for sexual violence. It is important that national efforts to reduce sexual violence consider how to address the unmet needs of children and adolescents with disabilities. As most adolescent girls spend the majority of their time in a school setting, it is of particular importance that school health professionals are aware of the current findings. |
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