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Updated: Jul 22, 2025
Imaging Features of Systemic Sclerosis-Associated Interstitial Lung Disease
Published on: June 16, 2020
Clinical scope and healthcare utilization in childhood interstitial lung disease at a tertiary center
Lance Feld1, Laura Voss1,2, Zeyu Nancy Li3
1Division of Pulmonary and Sleep Medicine, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Insights
Childhood interstitial lung disease (chILD) is a complex group of rare lung conditions. This study highlights significant healthcare utilization and diagnostic patterns in chILD patients at a major center.
Area of Science:
- Pediatric Pulmonology
- Rare Diseases
- Interstitial Lung Disease
Background:
- Childhood interstitial lung disease (chILD) encompasses a diverse range of rare diffuse lung diseases.
- Limited data exist on chILD prevalence, care patterns, and healthcare utilization due to the rarity of individual conditions.
Purpose of the Study:
- To evaluate the prevalence of chILD.
- To review diagnostic and clinical care patterns for chILD patients at a single tertiary care center.
Main Methods:
- Retrospective cohort study of 306 patients receiving pulmonary care at CHOP from January 2019 to December 2021.
- Utilized ICD-10 billing codes and electronic medical record review for patient identification and data extraction.
- Analyzed demographic data, symptom onset, diagnostic categories, interventions (genetic testing, lung biopsy), and healthcare utilization (hospitalization, ICU, oxygen use).
Main Results:
- 40% of cases had symptom onset before age 2.
- Most common diagnoses included oncologic disease (21.2%), bronchiolitis obliterans (10.1%), and connective tissue disease (9.5%).
- High healthcare utilization observed: 80.4% hospitalized, 45.1% in ICU, one-third requiring chronic oxygen; 2.3% mortality.
Conclusions:
- This study characterizes the scope of chILD and its extensive healthcare demands at a high-volume center.
- The EMR-driven data collection approach facilitates chILD cohort analysis and future study feasibility.
- Findings underscore the complexity and resource needs for managing childhood interstitial lung disease.
Abstract:
Childhood interstitial lung disease (chILD) is a heterogeneous group of diffuse lung diseases that can be challenging to diagnose. With relative rarity of individual entities, data are limited on disease prevalence, care patterns, and healthcare utilization. The objective of this study was to evaluate chILD prevalence and review diagnostic and clinical care patterns at our center. A single-center, retrospective cohort study was conducted of patients receiving care at the Children's Hospital of Philadelphia (CHOP) between 1 January 2019 and 31 December 2021. Through query of selected ICD-10 billing codes relevant for chILD and medical chart review, a total of 306 patients were identified receiving pulmonary care during this period. Respiratory symptom onset was documented to have developed before 2 years of age for 40% of cases. The most common diagnostic categories included those with oncologic disease (21.2%), bronchiolitis obliterans (10.1%), and connective tissue disease (9.5%). Genetic testing was performed in 49% of cases, while 36% underwent lung biopsy. Hospitalization at CHOP had occurred for 80.4% of patients, with 45.1% ever hospitalized in an intensive care unit. One-third of children had required chronic supplemental oxygen. Seven (2.3%) patients died during this 3-year period. Collectively, these data demonstrate the scope of chILD and extent of health care utilization at a large volume tertiary care center. This approach to cohort identification and EMR-driven data collection in chILD provides new opportunities for cohort analysis and will inform the feasibility of future studies.
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