title: Sociodemographic attributes and spina bifida outcomes.
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.
authors.affiliation: 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.
authors.forename: Michael S
authors.initials: MS
authors.lastname: Schechter
authors.affiliation: 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.
authors.forename: Tiebin
authors.initials: T
authors.lastname: Liu
authors.affiliation: 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.
authors.forename: Minn
authors.initials: M
authors.lastname: Soe
authors.affiliation: 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.
authors.forename: Mark
authors.initials: M
authors.lastname: Swanson
authors.affiliation: 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.
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Ward
authors.affiliation: 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.
authors.forename: Judy
authors.initials: J
authors.lastname: Thibadeau
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D005242:Fecal Incontinence / Q000453:epidemiology / Q000209:etiology; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D019458:Insurance Coverage; D008297:Male; D003668:Pressure Ulcer / Q000453:epidemiology / Q000209:etiology; D012042:Registries; D012307:Risk Factors; D012737:Sex Factors; D012959:Socioeconomic Factors; D016135:Spinal Dysraphism / Q000453:epidemiology* / Q000628:therapy*; D013223:Statistics as Topic; D016896:Treatment Outcome; D014481:United States; D014549:Urinary Incontinence / Q000453:epidemiology / Q000209:etiology; D055815:Young Adult
keywords: case-mix adjustment; demography; registries; socioeconomic status; spinal dysraphism; treatment outcome