Healthcare utilisation in childhood interstitial lung diseases: Analysis of chILD-EU registry data

Background Interstitial lung disease (ILD) is an umbrella term for more than 200 rare entities, with a high mortality in childhood and scarce information about healthcare and disease management. Objectives This study seeks to fill the knowledge gap about healthcare utilization of childhood ILD patients. Methods For the analysis we used data from the observational study chILD-EU (Children9s Interstitial Lung Disease in Europe) providing incident and prevalent cases from 4 countries and a substantial amount of medical information. In a baseline questionnaire parents answered questions about healthcare utilization of the last 3 months (in- and outpatient treatment, visiting healthcare professionals, use of medical aid and participation in rehabilitation programs). Results Study population included 129 children (56.6% male) with a median age of 4.5 years (IQR 1.1-10.9) and median disease duration of 1.8 years (IQR 0.6-4.7). 51 different disease entities were presented; median disease severity was 3, based on FAN 5 point scale physicians9 estimation. 49.6% of the children needed oxygen and 7.8% non-invasive ventilation. Within the last three months, 57.4% were hospitalized (if so median 18 days, IQR 6-56), 67.4% of the children had at least one visit at a physician or outpatient clinic (if so median 3 visits IQR 2-6), 38.0% had at least one visit at healthcare professionals (if so median 10 visits IQR 3-24), and 4.7% participated in rehabilitation programs (range 1-92 days). Conclusion Many childhood ILDs are associated with substantial use of healthcare services. Identification of predictive factors and their contribution are crucial for health services planning. Fund: grant FP7-305653-chILD-EU.