ABSTRACT
OBJECTIVE: Patient education in children with rare chronic diseases like children's interstitial lung disease (chILD) remains a challenge. AIMS: 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). METHODS: The study was conducted in two German centers for pediatric pulmonology, as a single-group intervention with pre-post-follow-up design. RESULTS: Participants (N = 107, age: M = 7.67, SD = 5.90) showed significant improvement of self-efficacy (self-report: t = 2.89, p < 0.01; proxy-report: t = 3.03, p < 0.01), and satisfaction (patients: t = 3.56, p = 0.001; parents t = 6.38, p < 0.001) with the medical consultations. There were no pre-post differences in HrQoL. Participants were highly satisfied with the material and the physicians with the program. CONCLUSIONS: The chILD education-program is a promising strategy to improve patients' and their parents' self-efficacy and treatment-satisfaction. Specific effects of the intervention need to be determined in a randomized controlled trial. PRACTICE IMPLICATION: Healthcare providers managing pediatric patients with chILD, may choose to use a patient education-program specifically tailored to the needs of chILD patients and their families, such as the program described here, which is the first of its kind.
