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Justin Swanson, MPH1; Elizabeth C. Ailes, PhD2; Janet D. Cragan, MD2; Scott D. Grosse, PhD3; Jean Paul Tanner, PhD1; Russell S. Kirby, PhD1; Norman J. Waitzman, PhD4; Jennita Reefhuis, PhD2; Jason L. Salemi, PhD1 (

Summary

What is already known about this topic?

Estimates of birth defect–associated hospitalization costs must be updated as detection, diagnosis, and treatment evolve for numerous birth defects.

What is added by this report?

During 2019, among patients aged What are the implications for public health practice?

These updated estimates of hospitalization costs illustrate the importance of continually determining the health care needs of persons with birth defects to ensure optimal health for all.

Tables

Related Materials

Abstract

Changing treatments and medical costs necessitate updates to hospitalization cost estimates for birth defects. The 2019 National Inpatient Sample was used to estimate the service delivery costs of hospitalizations among patients aged

Introduction

In the United States, major structural birth defects attributable to genetic, chromosomal, teratogenic, or unknown etiologies affect approximately 3% of live births (1) and are the leading cause of infant mortality, responsible for 21% of newborn and infant deaths (2). Their treatments incur significant financial costs throughout a person’s lifetime. As treatments and medical costs change, updates to hospitalization cost estimates for birth defects are needed.

Methods

Developed for the Healthcare Cost and Utilization Project (HCUP), the National Inpatient Sample (NIS) is the largest publicly available, all-payor inpatient care database in the United States.* NIS uses a 20% systematic sampling of all discharges from short-term, nonfederal community hospitals. Because NIS does not identify patients across multiple hospital visits, the unit of analysis for this study is individual hospitalization rather than individual patient. To reduce the impact of potential miscoding of age-related abnormalities as birth defects (particularly cardiovascular defects) (3), only patients aged Cost estimates were calculated as the product of the amount billed for a hospitalization and the corresponding hospital-level cost-to-charge ratios. HCUP-provided cost-to-charge ratios are computed on an annual basis for each hospital (total institutional service delivery costs divided by total amount charged by the hospital).† NIS records facility charges but not professional fees charged by physicians who are not hospital employees.

Birth defects were identified by scanning up to 40 available diagnosis code fields associated with each hospitalization among codes Q00–Q99 (congenital malformations, deformations, and chromosomal abnormalities) of the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM). Patent ductus arteriosus (Q25.0) and atrial septal defect (Q21.1) were not considered birth defects when occurring in neonates aged Sampling weights were applied to calculate national estimates of hospitalization frequency and cost. Mean, median, and total costs were calculated by patient demographic and birth defect code characteristics. Mean hospitalization costs were stratified by age group for selected individual birth defects and birth defect categories. If a hospitalization was associated with more than one defect included in the table, the full cost of the hospitalization was included for each defect. The individual birth defects listed include those defined in the National Birth Defects Prevention Network Congenital Malformations Surveillance Report.§ Statistical analyses were performed using SAS software (version 9.4; SAS Institute) with survey procedures incorporating sampling design. This activity was reviewed by CDC and was conducted consistent with applicable federal law and CDC policy.¶

Results

During 2019, a total of 937,295 birth defect–associated hospitalizations incurred a total cost of $22,204,754,855 (

Discussion

During 2019, the cost of hospitalizations for persons aged Using 2013 NIS data, the total cost of birth defect–associated hospitalizations was estimated to be $22.9 billion for all ages and $19.1 billion for persons aged 4). Those estimates included adjustments for professional fees, which historically added 20%–25% to facility costs (5). Applying the same adjustments to the current estimates yields a 2019 estimate of $26.6–27.8 billion in total birth defect–associated hospitalization costs for persons aged The findings in this report are subject to at least five limitations. First, determining which costs are directly attributable to birth defects is challenging because of difficulties in identifying all sequelae of birth defects and their respective codes, the coding of minor birth defects, and the possible miscoding of some acquired structural or functional abnormalities as birth defects (3). Excluding hospitalizations for persons aged ≥65 years reduces the risk for miscoding but fails to identify the contribution of birth defects among this age group. Second, the potential for two or more birth defects to be documented during the same hospitalization could lead to overestimation of costs for findings presented by individual defect or category. Third, cost-to-charge ratios calculated at the hospital level do not necessarily accurately reflect the costs of different types of hospital services (6), which could bias estimates of a person’s hospitalization costs in an unknown direction. Fourth, HCUP costs are limited to facility fees and fail to include physician or professional fees, thereby underestimating birth defect–associated hospitalization costs. Finally, it is difficult to distinguish the relationship between preterm birth and birth defects, and some of the birth defect–associated costs among preterm infants were possibly due to their prematurity rather than their birth defect.

Implications for Public Health Practice

Updated estimates of hospitalization costs for specific birth defects provide critical information about health care resource use. These data highlight the financial impact across the life span and illustrate the need to understand the continued health care needs of persons born with birth defects to ensure optimal health for all.

Corresponding author: Justin Swanson, jswanson1@usf.edu.

1Lawton and Rhea Chiles Center for Healthy Mothers and Babies, College of Public Health, University of South Florida, Tampa, Florida; 2Division of Birth Defects and Infant Disorders, National Center on Birth Defects and Developmental Disabilities, CDC; 3Office of the Director, National Center on Birth Defects and Developmental Disabilities, CDC; 4Department of Economics, University of Utah, Salt Lake City, Utah.

All authors have completed and submitted the International Committee of Medical Journal Editors form for disclosure of potential conflicts of interest. Russell S. Kirby holds the Marrell endowed chair at the University of South Florida, College of Public Health and serves on the board of directors for the National Birth Defects Prevention Network. Jason L. Salemi and Jean Paul Tanner report grant support to the Florida Department of Health, subcontracted to the University of South Florida, for Advancing Population-based Surveillance of Birth Defects. No other potential conflicts of interest were disclosed.

https://www.hcup-us.ahrq.gov/reports/methods/MS2021-05-CCR-Methodologies.pdf

§ https://www.nbdpn.org/docs/Birth_Defects_Data_and_Directory_2022.pdf

¶ 45 C.F.R. part 46; 21 C.F.R. part 56; 42 U.S.C. Sect. 241(d), 5 U.S.C. Sect. 552a, 44 U.S.C. Sect. 3501 et seq.

** https://meps.ahrq.gov/about_meps/Price_Index.shtml

References

  • CDC. Update on overall prevalence of major birth defects—Atlanta, Georgia, 1978–2005. MMWR Morb Mortal Wkly Rep 2008;57:1–5. PMID:18185492
  • Ely DM, Driscoll AK. Infant mortality in the United States, 2019: data from the period linked birth/infant death file. Natl Vital Stat Rep 2021;70:1–18. https://doi.org/10.15620/cdc:111053 PMID:34878382
  • Rodriguez FH 3rd, Raskind-Hood CL, Hoffman T, et al. How well do ICD-9-CM codes predict true congenital heart defects? A Centers for Disease Control and Prevention–based multisite validation project. J Am Heart Assoc 2022;11:e024911. https://doi.org/10.1161/JAHA.121.024911 PMID:35862148
  • Arth AC, Tinker SC, Simeone RM, Ailes EC, Cragan JD, Grosse SD. Inpatient hospitalization costs associated with birth defects among persons of all ages—United States, 2013. MMWR Morb Mortal Wkly Rep 2017;66:41–6. https://doi.org/10.15585/mmwr.mm6602a1 PMID:28103210
  • Peterson C, Xu L, Florence C, Grosse SD, Annest JL. Professional fee ratios for US hospital discharge data. Med Care 2015;53:840–9. https://doi.org/10.1097/MLR.0000000000000410 PMID:26340662
  • Salemi JL, Comins MM, Chandler K, Mogos MF, Salihu HM. A practical approach for calculating reliable cost estimates from observational data: application to cost analyses in maternal and child health. Appl Health Econ Health Policy 2013;11:343–57. https://doi.org/10.1007/s40258-013-0040-2 PMID:23807539
CharacteristicNo. of discharges (%)Total cost, USD (%)Mean cost, USDMedian cost, USD
All hospitalizations with a birth defect diagnosis937,295 (100.0)22,204,754,855 (100.0)23,6907,054
Position of birth defect diagnosis code, excluding birth hospitalizations (N = 583,665)
Principal diagnosis92,200 (15.8)4,628,169,299 (26.7)50,19721,837
Not principal diagnosis491,465 (84.2)12,734,760,311 (73.3)25,91210,693
Age group at admission, yrs
Birth353,630 (37.7)4,841,825,245 (21.8)13,6921,668
  • Identified by scanning up to 40 available fields for ICD-10-CM diagnosis codes Q00–Q99: congenital malformations, deformations, and chromosomal abnormalities. Patent ductus arteriosus (Q25.0) and atrial septal defect (Q21.1) were not considered birth defects when occurring in neonates aged † Birth defects categories correspond to blocks of ICD-10-CM diagnosis codes: cardiovascular (Q20–Q28), central nervous system (Q00–Q07), chromosomal (Q90–Q99), cleft lip/palate (Q35–Q37), ear (Q16–Q17), eye (Q10–Q15), gastrointestinal (Q38–Q45), genitourinary (Q50–Q64), integumentary (Q80–Q85), musculoskeletal (Q65–Q79), and other syndrome (Q87). “Other defect” includes birth defects of the face and neck (Q18), respiratory system (Q30–Q34), and other congenital malformations (Q86 and Q89). Critical cardiovascular defects (https://www.cdc.gov/ncbddd/heartdefects/facts.html) were operationalized using the National Birth Defects Prevention Network Congenital Malformations Surveillance Report (https://www.nbdpn.org/docs/Birth_Defects_Data_and_Directory_2022.pdf). The specific defects included are only those defined in the National Birth Defects Prevention Network Congenital Malformations Surveillance Report; birth defects not included contribute to frequencies and costs aggregated by birth defect category and overall. Because a single hospitalization might include more than one specific birth defect, individual birth defect frequencies might sum to >100% of birth defects categories or overall frequencies, and mean costs multiplied by frequencies will correspondingly sum to >100% of total costs.
Birth defect †Age group at admission, yrs
  • Identified by scanning up to 40 available diagnosis code fields for ICD-10-CM diagnosis codes Q00–Q99: congenital malformations, deformations, and chromosomal abnormalities.
    † Birth defects categories correspond to blocks of ICD-10-CM diagnosis codes: cardiovascular (Q20–Q28), CNS (Q00–Q07), chromosomal (Q90–Q99), cleft lip/palate (Q35–Q37), ear (Q16–Q17), eye (Q10–Q15), GI (Q38–Q45), genitourinary (Q50–Q64), integumentary (Q80–Q85), MS (Q65–Q79), and other syndrome (Q87). “Other defect” includes birth defects of the face and neck (Q18), respiratory system (Q30–Q34), and other congenital malformations (Q86 and Q89). Critical cardiovascular defects (https://www.cdc.gov/ncbddd/heartdefects/facts.html) were operationalized using the National Birth Defects Prevention Network Congenital Malformations Surveillance Report (https://www.nbdpn.org/docs/Birth_Defects_Data_and_Directory_2022.pdf). The specific defects included are only those defined in the National Birth Defects Prevention Network Congenital Malformations Surveillance Report; birth defects not included here contribute to frequencies and costs aggregated by birth defect category and overall.
    § Because a single hospitalization might include more than one specific birth defect, individual birth defect frequencies might sum to >100% of birth defects categories or overall frequencies, and mean costs multiplied by frequencies will correspondingly sum to >100% of total costs.
    ¶ For hospitalizations with any birth defect, the birth hospitalization costs include the costs for routine birth hospitalization.
    ** Cell sizes ≤10 were suppressed. Sums across all ages exclude suppressed cells.

###

Abbreviation: USD = U.S. dollars.

  • Identified by scanning up to 40 available fields of International Classification of Diseases, Tenth Revision, Clinical Modification diagnosis codes. Critical cardiovascular defects include common arterial trunk (Q20.0), double outlet right ventricle (Q20.1), transposition of the great arteries (Q20.3), single ventricle (Q20.4), tetralogy of Fallot (Q21.3), pulmonary valve atresia (Q22.0), tricuspid valve atresia (Q22.4), Ebstein anomaly (Q22.5), hypoplastic left heart syndrome (Q23.4), coarctation of aorta (Q25.1), interrupted aortic arch (Q25.21), and total anomalous pulmonary venous connection (Q26.2). Specific birth defects are identified as gastroschisis (Q79.3), small intestinal atresia or stenosis (Q41), diaphragmatic hernia (Q79.0 and Q79.1), spina bifida without anencephaly (Q05, Q07.01, and Q07.03), and trisomy 21 (Q90).

† The specific birth defects shown were selected to represent a range of body systems.

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