Elsevier

The Journal of Pediatrics

Volume 166, Issue 2, February 2015, Pages 444-450.e1
The Journal of Pediatrics

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

https://doi.org/10.1016/j.jpeds.2014.09.039Get rights and content

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.

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

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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).

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