Sociodemographic attributes and spina bifida outcomes

Area of Science:

• Pediatric Health Outcomes
• Spina Bifida Research
• Clinical Epidemiology

Background:

• The National Spina Bifida Patient Registry (NSBPR) was established in 2009.
• The registry aims to understand spina bifida (SB) natural history and treatment effects.
• This study explores sociodemographic associations with SB outcomes using NSBPR data.

Purpose of the Study:

• To investigate the relationship between sociodemographic characteristics and SB outcomes.
• To identify specific demographic factors influencing continence, mobility, and pressure sores in SB patients.

Main Methods:

• Utilized NSBPR data from 2009-2012, including 2054 patients under 22 years old from 10 SB clinics.
• Examined unadjusted associations between demographics and four key SB outcomes: bowel/bladder continence, mobility, and pressure sores.
• Developed multivariable logistic models, controlling for SB clinic, SB type, and lesion level.

Main Results:

• Older age was linked to increased continence and pressure sores, but decreased community ambulation.
• Male sex and lack of private insurance correlated with lower continence and community ambulation rates.
• Non-Hispanic Black patients showed reduced continence; lesion level and SB type significantly impacted outcomes; clinic variation was observed.

Conclusions:

• Sociodemographic factors demonstrably influence spina bifida outcomes.
• Specific groups (males, non-Hispanic Blacks, uninsured) face less favorable outcomes.
• These demographic considerations are crucial for clinical care and case-mix adjustment in SB management.