The National Spina Bifida Patient Registry: Profile of a Large Cohort of Participants from the First 10 Clinics

Details

• Alternative Title:
  J Pediatr
• Personal Author:
  Sawin, Kathleen J. ; Liu, Tiebin ; Ward, Elisabeth ; Thibadeau, Judy ; Schechter, Michael S. ; Soe, Minn M. ; Walker, William
• Description:
  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, χ2 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.
  
  
• Subjects:
  Adolescent Child Child, Preschool Cross-Sectional Studies Female Humans Infant Male Registries Spinal Dysraphism Young Adult

  More +
• Source:
  J Pediatr. 166(2):444-50.e1.
• Pubmed ID:
  25444012
• Pubmed Central ID:
  PMC4535790
• Document Type:
  Journal Article
• Funding:
  1UO1DDD000744.01/PHS HHS/United States ; CC999999/Intramural CDC HHS/United States
• Place as Subject:
  United States
• Volume:
  166
• Issue:
  2
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha256:6ab494f8363f39d44db3550549dec29d794f3e10406b80b6c9b44d65dada0fc0
• Download URL:
  https://stacks.cdc.gov/view/cdc/32875/cdc_32875_DS1.pdf
• File Type:
  [PDF - 260.33 KB ]