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Trends in the early care of infants with myelomeningocele in the United States 2012–2018

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Abstract

Purpose

The early care of children with spina bifida has changed with the increasing availability of fetal surgery and evidence that fetal repair improves the long-term outcomes of children with myelomeningocele. We sought to determine current trends in the prevalence and early care of children with myelomeningocele using a national administrative database.

Methods

This is a retrospective, cross-sectional cohort study of infants with spina bifida admitted within the first 28 days of life using the 2012–2018 Healthcare Cost and Utilization Project National Inpatient Database. Patients with spina bifida were identified by ICD code and stratified into a cohort with a coded neonatal repair of the defect and those without a coded repair. This database had no identifier specific for fetal surgery, but it is likely that a substantial number of infants without a coded repair had fetal surgery.

Results

We identified 5,090 patients with a coded repair and 5,715 without a coded repair. The overall prevalence of spina bifida was 3.94 per 10,000 live births. The percentage of patients without neonatal repair increased during the study period compared to those with repair (p = 0.0002). The cohort without neonatal repair had a higher risk of death (p < 0.001), prematurity (p < 0.001), and low birth weight (p < 0.001). More shunts were placed in patients who underwent neonatal repair (p < 0.001). Patients without neonatal repair were less likely to have public insurance (p = 0.0052) and more likely to reside in zip codes within the highest income quartile (p = 0.0002).

Conclusions

The prevalence of spina bifida from 2012 to 2018 was 3.94 per 10,000 live births, with an increasing number of patients without neonatal repair of the defect, suggesting increased utilization of fetal surgery. Patients without neonatal repair had a higher risk of death, prematurity, and low birth weight but were more likely to have commercial insurance and reside in high-income zip codes.

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Availability of data and material

The data used for this study are publicly available on the HCUP-NIS database.

Abbreviations

MOMS:

Management of Myelomeningocele Study

NAFTNet:

North American Fetal Therapy Network

HCUP-NIS:

Healthcare Cost and Utilization Project National (Nationwide) Inpatient Sample

KID:

Kid’s Inpatient Database

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Acknowledgements

The authors thank Carisa Bergner, MA, who provided independent statistical analysis of our data.

Author information

Authors and Affiliations

  1. Department of Neurosurgery, Medical College of Wisconsin, Milwaukee, WI, USA

    Benjamin J. Best, Irene Kim & Andrew B. Foy

  2. Department of Neurosurgery, Children’s Wisconsin, Milwaukee, WI, USA

    Benjamin J. Best, Irene Kim, Eileen C. Sherburne, Audrey Roach & Andrew B. Foy

  3. Division of Neonatology, Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA

    Erwin T. Cabacungan & Susan S. Cohen

  4. Division of Neonatology, Department of Pediatrics, Children’s Wisconsin, Milwaukee, WI, USA

    Erwin T. Cabacungan & Susan S. Cohen

  5. Department of Nursing Research and Evidence-Based Practice, Children’s Wisconsin, Milwaukee, WI, USA

    Eileen C. Sherburne & Kathleen J. Sawin

  6. College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI, USA

    Kathleen J. Sawin

Authors
  1. Benjamin J. Best
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  2. Erwin T. Cabacungan
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  3. Susan S. Cohen
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  4. Irene Kim
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  5. Eileen C. Sherburne
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  6. Kathleen J. Sawin
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  7. Audrey Roach
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  8. Andrew B. Foy
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Contributions

B. B., A. F., E. C., and S. C. wrote the manuscript text. E. C. performed data analysis. B. B. and E. C. prepared Figs. 1–2 and tables/appendices. All authors reviewed the manuscript.

Corresponding author

Correspondence to Benjamin J. Best.

Ethics declarations

Ethics approval, consent to participate, and consent for publication

The data used for this study are part of a publicly available database and are therefore exempt.

Conflict of interest

The authors have no competing interests as defined by Springer or other interests that might be perceived to influence the results and/or discussion reported in this paper.

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Appendices

Appendix 1

ICD-CM codes, NIS 2012–2018.

ICD-9-CM code

ICD-10-CM code

 

Included ICD codes

  
 

Q05.9

Spina bifida, unspecified

741.00

Q05.4

Spina bifida with hydrocephalus, unspecified region

741.01

Q05.0

Spina bifida with hydrocephalus, cervical region

741.02

Q05.1

Spina bifida with hydrocephalus, dorsal (thoracic) region

741.03

Q05.2

Spina bifida with hydrocephalus, lumbar region

 

QO5.3

Spina bifida with hydrocephalus, sacral region

741.90

 

Spina bifida without mention of hydrocephalus, unspecified region

741.91

Q05.5

Spina bifida without mention of hydrocephalus, cervical region

741.92

Q05.6

Spina bifida without mention of hydrocephalus, dorsal (thoracic) region

741.93

Q05.7

Spina bifida without mention of hydrocephalus, lumbar region

 

QO5.8

Spina bifida without mention of hydrocephalus, sacral region

Excluded ICD codes

  

756.17

Q76.0

Spina bifida occulta

742.51, 742.53 and 742.59

Q06.x

Other congenital malformations of spinal cord

742.59

Q06.0

Amyelia

742.59

Q06.1

Hypoplasia and dysplasia of spinal cord

742.51

Q06.2

Diastematomyelia

742.59

Q06.3

Other congenital cauda equina malformations

742.53

Q06.4

Hydromyelia

742.59

Q06.8

Other specified congenital malformations of spinal cord

742.59

Q06.9

Congenital malformation of spinal cord, unspecified

Appendix 2

Included ICD-PS codes, NIS 2012–2018.

ICD-9-PCS code

ICD-10-PCS code

 

03.51

 

Repair of spinal meningocele

 

005T0ZZ

Destruction of spinal meninges, open approach

 

005T3ZZ

Destruction of spinal meninges, percutaneous approach

 

005T4ZZ

Destruction of spinal meninges, percutaneous endoscopic approach

 

00QT0ZZ

Repair spinal meninges, open approach

 

00QT3ZZ

Repair spinal meninges, percutaneous approach

 

00QT4ZZ

Repair spinal meninges, percutaneous endoscopic approach

03.52

 

Repair of spinal myelomeningocele

 

00QT0ZZ

Repair spinal meninges, open approach

 

00QT3ZZ

Repair spinal meninges, percutaneous approach

 

00QT4ZZ

Repair spinal meninges, percutaneous endoscopic approach

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Best, B.J., Cabacungan, E.T., Cohen, S.S. et al. Trends in the early care of infants with myelomeningocele in the United States 2012–2018. Childs Nerv Syst 39, 2413–2421 (2023). https://doi.org/10.1007/s00381-022-05704-3

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