Development and evaluation of a generic education program for chronic diseases in childhood.


Objective: To support families with a chronically ill child, a modular curriculum and new healthcare structures (trainer education, quality management) for a group self-management program (ModuS) were developed. ModuS focuses on common psychosocial aspects of chronic conditions and comprises generic and disease-specific modules. A pilot test was conducted for asthma by comparing ModuS with an established asthma-specific education program (CAE). Methods: Under routine care conditions, 491 children (6-17 years) with asthma and their parents participated in a multi-center prospective study (265 ModuS; 226 CAE). Families’ program satisfaction, disease-specific knowledge, health-related quality of life (HRQoL), life satisfaction, and burden of disease were assessed before, directly following and six weeks after participation. Results: The families were highly satisfied with the program. CAE and ModuS were associated with improved disease-specific knowledge, children’s HRQoL and life satisfaction and decreased the families’ burden. This demonstrates comparability of existing care with the modular approach. Conclusion: The ModuS approach offers a structure for effective patient education programs aiming to improve self-management. As it focused on the similarities of chronic conditions, it provides the opportunity to establish education programs for a wide range of chronic childhood diseases. Practice implications: ModuS facilitates the development of new patient education programs.