Original ArticleThe National Spina Bifida Patient Registry: Profile of a Large Cohort of Participants from the First 10 Clinics
Section snippets
Methods
This descriptive study used baseline data obtained from the first NSBPR visit of the 2172 consented participants who were enrolled between March 2009 and June 2012 at the 10 first clinics. Patients were eligible for inclusion in the registry and in the current analysis if they had 1 of 4 SB types (MMC, meningocele, lipomyelomenigocele, or fatty filum) and received care from one of the participating clinics. The methods for the study, including those to monitor data quality and to obtain the
Context of Care
The distributions of demographic and clinical characteristics of the total sample of patients are reported in Table I. The mean age of the participants was 10.1 years (SD 8.1) and approximately 85% of them were younger than 18 years of age; the distribution of education levels corresponded with the age distribution. The largest cluster of school-aged participants was in grades 1-8. A majority of participants relied solely on public insurance. The balance had at least some private insurance.
Discussion
Our results demonstrate substantial variation in the distribution of variables related to Context of Care, Processes of Care, and Health Outcomes in patients with SB. We also found significant differences in these variables according to SB type (MMC, non-MMC). Most differences in the demographic variables were relatively small. The age distribution of this population is skewed toward younger ages. This finding may be attributable to several factors. Until recently, the SB population was
References (19)
- et al.
Adolescents with a chronic condition: challenges living, challenges treating
Lancet
(2007) Patient registry analyses: seize the data, but caveat lector
J Pediatr
(2008)- et al.
Prevalence of spina bifida among children and adolescents in 10 regions in the United States
Pediatrics
(2010) - et al.
Updated National Birth Prevalence estimates for selected birth defects in the United States, 2004-2006
Birth Defects Res A Clin Mol Teratol
(2010) Data and Statistics in the United States. Spina Bifida Homepage
(2011)- et al.
Trends in the postfortification prevalence of spina bifida and anencephaly in the United States
Birth Defects Res A Clin Mol Teratol
(2008) - et al.
Spina bifida subtypes and sub-phenotypes by maternal race/ethnicity in the National Birth Defects Prevention Study
Am J Med Genet A
(2012) - et al.
Spina bifida outcome: a 25-year prospective
Pediatr Neurosurg
(2001) - et al.
Transition to Adulthood
Cited by (0)
Funded by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (1UO1DDD000744.01). The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. The authors declare no conflicts of interest.
- ∗
A list of members of the NSBPR Coordinating Committee is available at www.jpeds.com (Appendix).