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

Area of Science:

• Pediatric Pulmonology
• Rare Diseases
• Patient Education

Background:

• Patient education for children with rare chronic diseases, such as children's interstitial lung disease (chILD), presents significant challenges.
• Effective educational strategies are crucial for empowering patients and caregivers in managing complex health conditions.

Purpose of the Study:

• To develop and evaluate a component-based educational program for individual counseling in chILD.
• To enhance patients' and caregivers' self-efficacy and treatment satisfaction.
• To assess physicians' satisfaction and patients' health-related quality of life (HrQoL) post-intervention.

Main Methods:

• A single-group intervention study with pre-post-follow-up design was conducted in two German pediatric pulmonology centers.
• The study included 107 participants (children with chILD and their caregivers).
• The program involved individualized counseling and chILD-specific educational materials.

Main Results:

• Significant improvements were observed in self-efficacy (patient and proxy reports) and treatment satisfaction (patient and parent reports).
• No significant pre-post differences were found in health-related quality of life (HrQoL).
• High satisfaction was reported by participants regarding the educational materials and by physicians regarding the program.

Conclusions:

• The developed chILD education program is a promising strategy for improving self-efficacy and treatment satisfaction in pediatric patients and their families.
• Further evaluation through a randomized controlled trial is recommended to determine specific intervention effects.
• The program offers a tailored educational approach for healthcare providers managing chILD.