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.

The National Spina Bifida Patient Registry: Past, present, and future

“…Publications to date include a paper describing the methods to implement a registry to collect data [2]; a description of the initial registry participants [3]; an investigation of the association between sociodemographic characteristics and patient outcomes [4]; and identification of factors associated with mobility [5]. A description of the methods for developing and refining a urologic protocol for newborns and young children with spina bifida has also been published [6].…”

Variation in surgical management of neurogenic bowel among centers participating in National Spina Bifida Patient Registry

“…Because of concerns that enrollment of patients into the NBSPR by SB centers was not random [9], we used previously described statistical methods in an attempt to control for selection bias in our analysis [10,11]. We first performed logistic regression among eligible and enrolled (EAE) patients to determine the association between various characteristics (age, gender, race/ethnicity, type of spina bifida diagnosis, functional level of lesion, and type of health insurance) and the odds of having the procedures of interest performed in that population; due to small numbers of predicted events at some centers, center was not included as a covariate in this model.…”

Longitudinal Study of Bladder Continence in Patients with Spina Bifida in the National Spina Bifida Patient Registry

“…12 Therefore, we used previously described methods to assess selection bias in enrollment. 19,20 With data of EAE participants at the last contact we built a logistic regression model predicting actual continence status from selected variables (age, gender, race/ethnicity, health insurance status, SB diagnosis, functional level of lesion) and estimated the probability of bladder continence.…”

“…9,10 However, little is known about bladder continence status through time. The existing literature contains mostly cross-sectional data consisting of continence information at only 1 point in time rather than longitudinally, 11,12 and there is no standard definition of continence used consistently across studies. 13 The paucity of long-term followup for SB related medical and surgical therapies leaves unclear to what degree these interventions affect incontinence through time and makes assessment of the efficacy of these interventions challenging.…”