Michael S Schechter1, Tiebin Liu2, Minn Soe2, Mark Swanson2, Elisabeth Ward3, Judy Thibadeau2. 1. Department of Pediatrics, Children's Hospital of Richmond at Virginia Commonwealth University, Richmond, Virginia; Rare Disorders and Health Outcomes Team, Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia; and mschechter@vcu.edu. 2. Rare Disorders and Health Outcomes Team, Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia; and. 3. Rare Disorders and Health Outcomes Team, Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia; and Carter Consulting, Inc, Atlanta, Georgia.
Abstract
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.
BACKGROUND: A National Spina BifidaPatient 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.
Authors: Tiebin Liu; Lijing Ouyang; Judy Thibadeau; John S Wiener; Jonathan C Routh; Heidi Castillo; Jonathan Castillo; Kurt A Freeman; Kathleen J Sawin; Kathryn Smith; Alexander Van Speybroeck; Rodolfo Valdez Journal: J Urol Date: 2017-11-11 Impact factor: 7.450
Authors: Jonathan C Routh; David B Joseph; Tiebin Liu; Michael S Schechter; Judy K Thibadeau; M Chad Wallis; Elisabeth A Ward; John S Wiener Journal: J Pediatr Rehabil Med Date: 2017-12-11
Authors: John S Wiener; Kristina D Suson; Jonathan Castillo; Jonathan C Routh; Stacy Tanaka; Tiebin Liu; Elisabeth Ward; Judy Thibadeau; David Joseph; National Spina Bifida Patient Registry Journal: J Pediatr Rehabil Med Date: 2017-12-11
Authors: Kathryn A Smith; Tiebin Liu; Kurt A Freeman; Cecily Betz; Gerald H Clayton; Heidi Castillo; Jonathan Castillo; Duong Tu; Alexander Van Speybroeck; William O Walker Journal: J Pediatr Rehabil Med Date: 2019
Authors: Jonathan C Routh; David B Joseph; Tiebin Liu; Michael S Schechter; Judy K Thibadeau; M Chad Wallis; Elisabeth A Ward; John S Wiener Journal: J Urol Date: 2017-08-19 Impact factor: 7.450
Authors: Noreen B Alabi; Judy Thibadeau; John S Wiener; Mike J Conklin; Mark S Dias; Kathleen J Sawin; Rodolfo Valdez Journal: Pediatrics Date: 2018-09 Impact factor: 7.124