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, childreńs 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.