Examining the characteristics of children with spina bifida in a population-based surveillance system and a clinic-based patient registry Público
Anderson, Jaynia Angela (2014)
Abstract
Background: Spina bifida substantially contributes
to perinatal mortality and lifelong disability. Population-based
surveillance systems monitor birth defect trends, risk factors, and
effectiveness of prevention programs. Clinic-based patient
registries provide data for advancing knowledge in the
understanding of disease progression and
management.
Methods: Demographic and clinical characteristics were
described for 3,685 children with spina bifida included in a
population-based surveillance system and 1,598 children with spina
bifida included in a clinic-based patient registry. The
distributions of race/ethnicity among the two systems were compared
with the respective underlying statewide and metropolitan area
populations. The distributions of spina bifida subtypes by
race/ethnicity were also described.
Results: The race/ethnicity distributions of both systems
were significantly different from their respective underlying
populations, with an under-representation of NH black children.
Most children in both systems had the myelomeningocele or related
subtype and more than half had hydrocephalus. In both systems, the
distribution of spina bifida subtype was similar among NH white and
NH black children but different among Hispanic
children.
Conclusions: Population-basedsurveillance
systems assist in quantitatively evaluating the burden of spina
bifida in the population, and clinic-based patient registries are
useful in understanding the clinical characteristics of spina
bifida patients. Similar overall patterns are seen in
both catchment systems and the two systems differ from the
underlying populations. The population-based surveillance system
differ because of the differing burden of disease across
race/ethnicity groups; and the patient registry might differ
because of issues related to access to care and utilization of care
by different race/ethnicity groups. However, there was
insufficient data available to determine the cause of the observed
differences.
Table of Contents
Background/Literature
Review…………………….….……………...…...…1
Introduction…………………………………………………..………….............17
Methods………………………………………………………………...........…..…19
Results………………………………………………………………………............23
Discussion……………………………………………………………………..........28
Conclusion……………………………………………………………………..........35
References…………………………………………………………........………….36
Tables…………………………………………………………….........….……...…44
Appendices..................................................................51
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