Testing the feasibility of a National Spina Bifida Patient Registry

Thibadeau, Judy; Ward, Elisabeth; Soe, Minn; Liu, Tiebin; Swanson, Mark E.; Sawin, Kathleen J.; Freeman, Kurt A.; Castillo, Heidi; Rauen, Karen; Schechter, Michael S.

doi:10.1002/bdra.23094

Cited by 53 publications

(60 citation statements)

References 12 publications

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“…After institutional review board approval and obtaining informed consent/assent from parents and patients, the clinics collected longitudinal data on individuals with SB. 16 At the initial visit, basic demographic and diagnostic information as well as information on surgical procedures were collected from each patient. At the initial visit and each subsequent annual visit, information on insurance status, anthropometric measurements, surgeries and procedures, education and employment, and treatments and outcomes was also collected.…”

Section: Methodsmentioning

confidence: 99%

Factors Associated With Pressure Ulcers in Individuals With Spina Bifida

Kim¹,

Ward

Dicianno

et al. 2015

Archives of Physical Medicine and Rehabilitation

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Objective To describe factors associated with pressure ulcers in individuals with spina bifida (SB) enrolled in the National Spina Bifida Patient Registry (NSBPR). Design Unbalanced longitudinal multicenter cohort study. Setting Nineteen SB clinics. Participants Individuals with SB (N=3153) enrolled in 19 clinic sites that participate in the NSBPR. Interventions Not applicable. Main Outcome Measures Pressure ulcer status (yes/no) at the annual visit between 2009 and 2012. Results Of 3153 total participants, 19% (n=603) reported ulcers at their most recent annual clinic visit. Seven factors–level of lesion, wheelchair use, urinary incontinence, shunt presence, above the knee orthopedic surgery, recent surgery, and male sex–were significantly associated with the presence of pressure ulcers. Of these factors, level of lesion, urinary incontinence, recent surgery, and male sex were included in the final logistic regression model. The 3 adjusting variables–SB type, SB clinic, and age group–were significant in all analyses (all P<.001). Conclusions By adjusting for SB type, SB clinic, and age group, we found that 7 factors–level of lesion, wheelchair use, urinary incontinence, shunt presence, above the knee orthopedic surgery, recent surgery, and male sex–were associated with pressure ulcers. Identifying key factors associated with the onset of pressure ulcers can be incorporated into clinical practice in ways that prevent and enhance treatment of pressure ulcers in the population with SB.

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Section: Methodsmentioning

confidence: 99%

Factors Associated With Pressure Ulcers in Individuals With Spina Bifida

Kim¹,

Ward

Dicianno

et al. 2015

Archives of Physical Medicine and Rehabilitation

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“…3 Between September 2008 and August 2009, 9 SB clinic sites (1 site included 2 clinics, for a total of 10 clinics), each being multidisciplinary and serving a minimum of 250 patients, were funded to participate in the registry and report longitudinal data on patients having 1 of 4 diagnoses (myelomeningocele, meningocele, lipomyelomeningocele, or fatty filum). Approval was obtained from local institutional review boards, and informed consent (and/or assent, as indicated by age) was obtained from parents and patients.…”

Section: Methodsmentioning

confidence: 99%

“…Based on this assessment and the experiences of other organizations (such as the Cystic Fibrosis Foundation 2 ), a National SB Patient Registry (NSBPR) was established in 2009 to systematically gather data regarding the natural history of SB in patients attending SB clinics to support SB clinical research and to better understand the effects of treatments provided in SB programs across the United States. 3 …”

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confidence: 99%

Sociodemographic Attributes and Spina Bifida Outcomes

et al. 2015

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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.

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“…Nine sites (10 clinics, with 1 site including 2 clinics) were funded by CDC to participate in NSBPR to test the feasibility of using a standard data collection tool to gather longitudinal data from patients having a diagnosis of MMC, meningocele, lipomyelomeningocele or fatty filum between 2008 and 2009. 14 Two additional diagnoses were added in 2013, ie split cord malformation and terminal myelocystocele. By 2015 a total of 26 sites (29 clinics, with 3 sites including 2 clinics each) had joined NSBPR.…”

Section: Methodsmentioning

confidence: 99%

“…Numerous systematic procedures are implemented at clinic sites and the CDC Data Management Center to ensure data quality. 14 …”

Section: Methodsmentioning

confidence: 99%

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

et al. 2018

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Purpose Achieving bladder continence in individuals with spina bifida is a lifetime management goal. We investigated bladder continence status through time and factors associated with this status in patients with spina bifida. Materials and Methods We used National Spina Bifida Patient Registry data collected from 2009 through 2015 and applied generalized estimating equation models to analyze factors associated with bladder continence status. Results This analysis included 5,250 participants with spina bifida in a large, multi-institutional patient registry who accounted for 12,740 annual clinic visit records during the study period. At last followup mean age was 16.6 years, 22.4% of participants had undergone bladder continence surgery, 92.6% used some form of bladder management and 45.8% reported bladder continence. In a multivariable regression model the likelihood of bladder continence was significantly greater in those who were older, were female, were nonHispanic white, had a nonmyelomeningocele diagnosis, had a lower level of lesion, had a higher mobility level and had private insurance. Continence surgery history and current management were also associated with continence independent of all other factors (adjusted OR and 95% CI 1.9, 1.7–2.1 and 3.8, 3.2–4.6, respectively). The association between bladder management and continence was stronger for those with a myelomeningocele diagnosis (adjusted OR 4.6) than with non-myelomeningocele (adjusted OR 2.8). Conclusions In addition to demographic, social and clinical factors, surgical intervention and bladder management are significantly and independently associated with bladder continence status in individuals with spina bifida. The association between bladder management and continence is stronger in those with myelomeningocele.

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Testing the feasibility of a National Spina Bifida Patient Registry

Cited by 53 publications

References 12 publications

Factors Associated With Pressure Ulcers in Individuals With Spina Bifida

Factors Associated With Pressure Ulcers in Individuals With Spina Bifida

Sociodemographic Attributes and Spina Bifida Outcomes

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

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