Healthcare burden in spina bifida: Measuring time toxicity in the first year of life.

Authors

Caleb Q Ashbrook, Raphael R Pasala, Corina B Do, Vijay Rings, Lauren E Corona, Brendan T Frainey, Douglass B Clayton

Published in

Journal of pediatric urology. Volume 22. Issue 6. Pages 106189. Aug 05, 2026. Epub Aug 05, 2026.

Abstract

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.
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.
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).
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.

PMID:
42612426
Bibliographic data and abstract were imported from PubMed on 19 Aug 2026.

Read full publication at:
Please sign in to see all details.

Stats

1-terrible, 9-excellent. How would you rate this publication? Sign in in to submit your rating.

Post a comment

You need to be signed in to post comments. You can sign in here.

Comments

There are no comments yet.