1. Summary and Conclusion
CURRENT PRACTICE OF DRUG TREATMENT IN CHILDREN WITH ILD: FIRST INSIGHTS FROM THE CHILD-EU REGISTRY
Boglárka Szentes¹ , Sabine Witt¹, Prof. Andrew Bush, MD², Prof. Steve Cunningham MD², Nagehan Emiralioglu MD²,
Prof. Lutz Goldbeck, PhD², Prof. Matthias Griese, MD², Meike Hengst, MD², Prof. Nural Kiper, MD²,
Katarzyna Krenke, MD², Joanna Lange MD², Prof. Reiner Leidl, PhD¹ , Nicolaus Schwerk,MD², Larissa Schwarzkopf, PhD¹
Objectives
Childhood interstitial lung disease (ChILD) is an umbrella term for more than 200 rare pulmonary conditions, including for example Neuroendocrine Cell Hyperplasia and Surfactant disorders. Several of the disease entities are associated with a high mortality and most with significant morbidity in childhood. So far, there is only little information available on medical treatment regimens, healthcare utilization and clinical outcomes. We therefore aimed to gather evidence on drug utilization in Europe, especially considering the role of corticosteroid treatment.
Results
174 patients originated from 6 different European countries: Germany (50.6%), United Kingdom (21.3%), Poland (12.1%), Turkey (9.2%), Italy (4.6%) and Denmark (2.3%)
Baseline characteristics and healthcare utilization
Corticosteroid intake
Overall
N=174
Never
n=63
In the past
n=52
Currently
n=59
Male (%)
98 (56.3)
37(21.3)
30(17.2)
31(17.8)
Median age at database inclusion in years (IQR)
4.5( )
2.8( )
6.5( )
4.1( )
Median disease severity FAN 5 point scale (IQR)
3.0 ( )
Median disease duration in years (IQR)
1.8 ( )
1.7( )
3.6( )
0.9( )
At least one visit at a healthcare professional (%)
72(41.4)
25(34.7)
22(30.6)
Median visits at a healthcare professional, if at least one visit(IQR)
5.0( )
6.0( )
4.0( )
At least one visit at a physician or outpatient clinic (%)
134(77.0%)
50(37.3)
40(29.9)
44(32.8)
Median visits at an office-based physician or outpatient clinic, if at least one visit (IQR)
3.0( )
3.0( )
3.0( )
At least one visit at the hospital(%)
105(60.3)
23(13.2)
45(25.8)
Median days in hospital if at least one day (IQR)
14.0( )
16.0( )
11.0( )
16.0( )
Median ICU days if at least one day in hospital (IQR)
12.5( )
10.0( )
8.5( )
20.0( )
Patients having rehabilitation(%)
7(5.1)
3(42.9)
2(28.6)
Number of medication taken at baseline (IQR)
1.0(0-2.0)
1.0(0-1.0)
1.0( )
Methods
Data originates from the ChILD-EU registry, including incident and prevalent ILD-cases ≤ 18 years of age from different European countries
Patients or their parents answered questions about healthcare utilization at survey-entry and at routine time visits
Healthcare utilization refers to a three months time period prior to the visit
Data on demographics, medication and health outcomes were documented by study nurses parallel to the questionnaires
Healthcare utilization was analyzed via logistic regression models adjusting for sex, age, country, education of the parents, subjective socioeconomic status, disease severity, disease status (incident/prevalent) and corticosteroid intake
IQR: Interquartile Range
ICU: Intensive care Unit
Regression models show that patients taking corticosteroids are more often hospitalized (OR: 2.57 p=0.0115), but there is no association between corticosteroid intake and visits at their general practitioner/ specialist(p=0.8379);
or between corticosteroid intake and participation in a rehabilitation program (p=0.1929)
Summary and Conclusion
Corticosteroids were the most frequently used treatments in cases with childhood ILD. Children who are hospitalized more frequently receive corticosteroids more often. Impact on service utilization on the long run and on predisposing factors needs to be further investigated. Also a llongitudinal analysis of ChILD-EU data is needed to demonstrate whether corticosteroids or other medicaments can be linked to mortality and quality of life outcomes.
Grant FP chILD-EU.
¹Helmholtz Zentrum München, German Research Center for Environmental Health (GmbH), Institute of Health Economics and Health Care Management, Member of the German Center for Lung Research, Ingolstädter Landstraße 1, Neuherberg, Germany
²On behalf of the chILD-EU Study group (
Corresponding author: Boglárka Szentes