Patient education for children with interstitial lung diseases and their caregivers: A pilot study

•We developed the first chILD-specific patient education-program.•Preliminary results of our pilot study show improved self-efficacy among patients with chILD.•Participants reported high satisfaction with the program.•Physicians also reported high satisfaction with conducting patient education.•Participants did not experience changes in HrQoL after the intervention. Patient education in children with rare chronic diseases like children’s interstitial lung disease (chILD) remains a challenge. To develop and evaluate a component-based educational program for individual counselling and to improve patients’ and caregivers’ self-efficacy and treatment satisfaction. Furthermore, to create chILD-specific educational material and assess physicians’ satisfaction with the intervention as well as patients’ health-related quality of life (HrQoL). The study was conducted in two German centers for pediatric pulmonology, as a single-group intervention with pre-post-follow-up design. Participants (N = 107, age: M = 7.67, SD = 5.90) showed significant improvement of self-efficacy (self-report: t = 2.89, p