Evaluation of a generic patient education program in children with different chronic conditions.

For frequent pediatric chronic conditions, especially less common chronic conditions patient education programs are missing. A recently developed modular patient education approach (ModuS) combines disease-specific modules with generic psychosocial topics. ModuS was associated with increased disease-specific knowledge and improvements in families' well-being in children with asthma. In this study we tested if new developed ModuS programs for seven, mostly less common, chronic conditions show comparable program-associated effects. ModuS education programs were offered to the affected child and its parents. Disease-specific knowledge, children's health-related quality of life, life satisfaction and condition-specific burden were measured before, directly following and 6 weeks after participation in the program. The results were compared with families who received a ModuS asthma program. One hundred and sixty-eight children participated. Families were highly satisfied with the programs. Program participation was associated with increased families' knowledge, children`s self-reported health-related quality of life and reduced condition-specific burden. The results were comparable with the results of 230 families who participated in a ModuS asthma program. The ModuS approach allowed the development of patient education programs for children with a variety of chronic conditions. Therefore, ModuS closed an important healthcare gap.

Two-Year Follow-Up of a Transition-Specific Education Program for Young People With Chronic Conditions.

PURPOSE: The transition to adulthood is a challenging process for young people (YP) with chronic conditions. Patient education can help to prepare them for autonomous disease management and transfer to adult healthcare services. In a previous controlled study, participation in the youth-specific group education program ModuS-T immediately improved transition-specific knowledge, competencies, and patient activation of YP with various chronic conditions. To evaluate whether these effects are long lasting, we questioned YP from the intervention group (IG) and the control group (CG; no program) 2 years after participation. METHODS: Standardized questionnaires were used to assess YP's transition-specific knowledge, competencies, patient activation, health-related quality of life, and medical care status at baseline and 2 years later. Repeated measurement covariance analyses were used for statistical testing. RESULTS: A total of 181 YP (109 IG, 72 CG) completed the questionnaires (60% of previous interviewees; mean age 20 years, 46% female). Compared to the CG, the IG reported significant improvements in transition-specific knowledge, competencies, and patient activation (p < .001) and lower parents' responsibility for their condition (p = .004). The proportion of YP who had already transferred to adult health care was nearly the same (54% IG/56% CG), but the CG was more likely to lose access to medical care (6% IG/14% CG). There were no effects on health-related quality of life. DISCUSSION: The 1.5-day ModuS-T program has long-lasting positive effects on knowledge and competencies relevant for the transition of YP. Transition-specific patient education programs close an important care gap and should be integrated into standard care.

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, childrens 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.