# Risk Stratification of Long-Term Mortality in Infants with Congenital Diaphragmatic Hernia Using the National Health Insurance Service (NHIS) Data

**Authors:** Hye Ji Han, Min Ji Suh, In Young Choi, Ji Soo Park, Hwan Soo Kim, Hyeon-Jong Yang, Dong In Suh, Eun Lee, Kyung Hoon Kim

PMC · DOI: 10.3390/children13010108 · Children · 2026-01-12

## TL;DR

This study uses nationwide health insurance data to estimate long-term mortality in infants with congenital diaphragmatic hernia and creates a risk stratification tool.

## Contribution

The study introduces a population-level nomogram for predicting 5-year mortality in CDH infants using nationwide claims data.

## Key findings

- Rural residence, middle-to-high SES, respiratory distress, and CHD were linked to higher 5-year mortality in CDH infants.
- The nomogram showed moderate discriminatory power (AUC 0.76; C-index 0.78) for predicting long-term mortality.
- Nationwide data from 2002 to 2016 provided population-level insights into CDH-related mortality.

## Abstract

Background: Congenital diaphragmatic hernia (CDH) is a rare but serious congenital anomaly linked to high mortality rates and significant long-term morbidity. Although numerous prognostic factors for short-term outcomes have been identified through hospital-based studies, data on long-term mortality at the population level are limited. Specifically, nationwide assessments of long-term outcomes for infants with CDH are scarce. This study aimed to estimate the national 5-year all-cause mortality for CDH and to create a population-level risk stratification nomogram utilizing nationwide health insurance claims data. Methods: We conducted a retrospective cohort study of infants with CDH using nationwide insurance claims data from 2002 to 2016, allowing for complete 5-year follow-up. We analyzed population-level demographic and clinical proxy variables with Cox proportional hazards models and developed a nomogram for long-term mortality risk stratification. Results: Factors such as rural residence, middle-to-high SES, respiratory distress in newborns, and CHD were associated with increased 5-year mortality in infants with CDH. The claims-based nomogram, which incorporated sociodemographic and comorbidity variables, demonstrated moderate discriminatory power (AUC 0.76; C-index 0.78) for population-level risk stratification. Conclusions: This nationwide claims-based cohort study provides population-level estimates of 5-year mortality associated with CDH and introduces a nomogram that offers moderate discriminatory ability for long-term risk stratification.

## Linked entities

- **Diseases:** congenital diaphragmatic hernia (MONDO:0005711)

## Full-text entities

- **Diseases:** congenital anomaly (MESH:D000013), respiratory distress (MESH:D012128), CDH (MESH:D065630)

## Full text

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## Figures

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## References

14 references — full list in the complete paper: https://tomesphere.com/paper/PMC12839643/full.md

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Source: https://tomesphere.com/paper/PMC12839643