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Characteristics and Outcomes of Patients With Spina Bifida in Texas by Patient Age
Sarah Peiffer1, Mike Gyimah1, Paulina Powell2
1Michael E. DeBakey Department of Surgery, Baylor College of Medicine, Houston, Texas; Division of Pediatric Surgery, Department of Surgery, Texas Children's Hospital, Houston, Texas.
Insights
Spina bifida (SB) care in Texas is concentrated in a few specialized facilities, with infants experiencing higher severity and longer hospital stays. Coordinated, multidisciplinary care is crucial for optimizing outcomes in pediatric SB patients.
Area of Science:
- Pediatric Surgery
- Urology
- Neurology
Background:
- Spina bifida (SB) affects 3.5 per 10,000 live births, leading to significant long-term neurological and urological complications.
- Understanding the characteristics and outcomes of pediatric SB patients is essential for improving care.
- The distribution and capacity of facilities providing SB care require examination.
Purpose of the Study:
- To explore the characteristics and outcomes of pediatric patients with spina bifida (SB) in Texas.
- To identify the facilities that provide care for pediatric SB patients.
- To analyze patient demographics, treatment patterns, and associated costs.
Main Methods:
- Retrospective review of a statewide hospital inpatient discharge database from 2013-2021.
- Identification of pediatric patients (<18 years) with SB using ICD-9/10 codes.
- Exclusion of transferred patients to prevent data duplication; descriptive statistics and chi-square tests were performed.
Main Results:
- Analysis of 7,531 inpatient hospitalizations for SB.
- Care is centralized: 1% of facilities handle 33% of admissions, 8% handle 51%, while 75% manage <1 admission annually.
- Infants showed higher illness severity (17%) and longer lengths of stay (19 days vs. 8 days overall).
- Mortality was low (1%), concentrated in neonates (8%). Surgical interventions were common (63% of encounters), with spinal procedures in infants and genitourinary procedures in older children.
- Average cost per encounter was $25,786 ± $24,884.
Conclusions:
- Pediatric SB care in Texas is predominantly managed by a small number of specialized centers.
- Patients require ongoing, multidisciplinary care due to evolving surgical needs throughout their growth.
- Longitudinal care coordination is vital for optimizing patient outcomes and managing complex health requirements.
Introduction:
Spina bifida (SB) occurs in 3.5/10,000 live births and is associated with significant long-term neurologic and urologic morbidity. We explored the characteristics and outcomes of pediatric patients with SB and the facilities that treat them in Texas.
Methods:
We retrospectively reviewed a statewide hospital inpatient discharge database (2013-2021) to identify patients aged <18 y with SB using International Classification of Diseases 9/10 codes. Patients transferred to outside hospitals were excluded to avoid double-counting. Descriptive statistics and chi-square test were performed.
Results:
Seven thousand five hundred thirty one inpatient hospitalizations with SB were analyzed. Most SB care is provided by a few facilities. Two facilities (1%) averaged >100 SB admissions per year (33% of patients), while 15 facilities (8%) treat 10-100 patients per year (51% of patients). Most facilities (145/193, 75%) average less than one patient per year. Infants tended to be sicker (17% extreme illness severity, P < 0.001). Overall mortality is low (1%), primarily occurring in the neonatal period (8%, P < 0.001). Most admissions are associated with surgical intervention, with 63% of encounters having operating room charges with an average cost of $25,786 ± 24,884. Admissions for spinal procedures were more common among infants, whereas admissions for genitourinary procedures were more common among older patients (P < 0.001). The average length of stay was 8 ± 16 d with infants having the longest length of stay (19 ± 33, P < 0.001).
Conclusions:
Patients have significant long-term health needs with evolving pediatric surgical indications as they grow. Pediatric SB care is primarily provided by a small number of facilities in Texas. Longitudinal care coordination of their multidisciplinary surgical care is needed to optimize patient care.
