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Healthcare burden in spina bifida: Measuring time toxicity in the first year of life
Caleb Q Ashbrook1, Raphael R Pasala1, Corina B Do1
1Department of Urology, Vanderbilt University Medical Center, Nashville, TN 37232, USA.
Insights
Infants with spina bifida (SB) experience significant healthcare interactions, averaging 28.5 days in the first year. Premature birth (<34 weeks gestational age) dramatically increases this burden, highlighting a key factor in early care.
Area of Science:
- Pediatric Surgery
- Neurology
- Public Health
Background:
- Spina bifida (SB) is a complex neural tube defect requiring lifelong healthcare.
- The first year involves critical interventions, management of complications, and adaptation to extensive medical care.
- Time toxicity, a measure of healthcare interaction burden, is crucial for understanding patient and family experiences.
Purpose of the Study:
- To quantify time toxicity in the first year of life for infants with SB.
- To identify clinical and demographic factors associated with increased healthcare contact days.
- To test the hypothesis that higher SB level, prematurity, and postnatal closure correlate with increased contact days.
Main Methods:
- Retrospective review of 72 SB patients over one year (November 2017 - December 2024).
- Data abstraction included demographics, clinical variables, NICU days, and post-NICU ambulatory/institutional contact days.
- Univariate and multivariable analyses examined associations between contact days and patient characteristics.
Main Results:
- Median NICU days were 13, and median total contact days were 28.5 in the first year.
- Infants born <34 weeks gestational age (GA) had significantly increased total contact days (98%) and NICU days (158%).
- Prenatal closure was linked to prematurity and increased contact days; fewer than two surgeries correlated with fewer contact days.
Conclusions:
- Infants with SB face a substantial healthcare burden, with a median of 28.5 contact days in the first year.
- Prematurity (<34 weeks GA) is a primary driver of increased early healthcare contact, more so than lesion-specific factors.
- These findings can inform family counseling and highlight the need for further research on long-term healthcare burden drivers.
Background:
Spina bifida (SB) encompasses a range of congenital neural tube defects that requires lifelong contact with the healthcare system. The first year of life may entail defect closure, management of comorbidities, and adjusting to the burden of multidisciplinary care. Time toxicity is an emerging, patient-centered concept that quantifies the burden of healthcare interaction associated with a diagnosis - days interacting with healthcare and away from home. We aimed to quantify time toxicity in the first year of life with SB and hypothesized that higher SB level, prematurity and postnatal closure correlate with increased contact days.
Materials And Methods:
We performed a single-center retrospective review of patients diagnosed with SB from November 2017 to December 2024. Demographics, clinical variables, neonatal intensive care unit (NICU) days, ambulatory contact (clinic visits, urgent care, labs, imaging) and institutional contact days (inpatient hospitalization, surgery, emergency visits) after NICU discharge were abstracted for those with one year of data from diagnosis. Univariate and multivariable analysis were performed to examine associations between total contact days and NICU days with clinical and demographic variables.
Results:
72 patients met inclusion criteria. Median NICU days was 13 (IQR 7.25-29) and median total contact days in the first year was 28.5 (IQR 21.25 to 45.5). 23.6% were born at <34 weeks gestational age (GA) and 26.4% underwent prenatal closure. Prenatal closure was associated with higher risk of delivery before 34 weeks (Risk Ratio 5.1, p < 0.001). On univariate analysis, GA < 34 weeks, prenatal closure, and a rotational skin flap for closure were associated with greater contact days and NICU days. On multivariable analysis, infants born <34 weeks GA experienced a 98% and 158% increase in total contact days and NICU days, respectively (Incidence Rate Ratio (IRR) = 1.98 and 2.58, p < 0.001, both) and patients with <2 surgeries (excluding index closure) had 49% fewer total contact days (IRR 0.49, p < 0.001).
Conclusion:
In the first year of life with SB, caregivers may expect a median of 13 NICU days and 28.5 total contact days with significantly increased contact days for infants born <34 weeks GA. Despite the importance of lesion specific factors in long-term outcomes, GA was the strongest driver of early healthcare contact. These findings may improve early counseling for families. Future studies exploring longer intervals from diagnosis may help capture lesion-specific factors that drive healthcare burden.
