Abstract
AbstractObjectivesFor young people (YP) with a chronic condition growing up is a challenging process. This stage of life is associated with a higher risk for non-adherence, insufficient disease control, acute deteriorations and irregular consultations. Patient education programs can support YP cope with the independent disease management and the transition into adulthood. However, there is a lack of transition-oriented patient education programs for most chronic conditions. In this study, an existing generic transition-oriented education program was expanded by a module for parents and evaluated in a multicenter study all over Germany.MethodsYP with chronic conditions and their parents were quasi-randomized into a control group (CG) and an intervention group (IG). The IG took part in the 1.5-day standardized education program ModuS-T while the CG received treatment as usual. The education program was designed as a compact workshop in a group setting for youth (15–24 years) and their parents. The education program contained youth specific topics such as the transfer to adult care, the influence of disease on the daily life of YP, and other important issues like detachment from parents, occupational career, intimate relationships and family planning. The parent module dealt with the topics transition from child-centered to adult health services, and supporting children to become adults. The program focused on improving competencies relevant for transition and self-management skills of the families. Satisfaction with the program, transition-specific knowledge, transition competencies, patient activation and health-related quality of life (HRQoL) were measured at baseline and after 4 weeks.ResultsA total of 300 YP (overall mean age 17.6 years; 47% female; IG = 166, CG = 134) with 12 different conditions and their parents participated in 37 transition programs. The participants were highly satisfied with the program. The program significantly affected transition-specific knowledge, transition competence and patient activation (p < 0.001). There were no effects on HRQoL.ConclusionThe generic transition-oriented education program empowers YP with chronic conditions and their parents in the transition process. Due to a modular approach, the program is successful in a variety of chronic conditions.
Highlights
Young people (YP) growing up with a chronic condition face the complex process of transition from adolescence to adulthood
Of 970 young people (YP) invited to the study, 504 initially declared their interest
We included all patients with complete datasets, and only those patients of the intervention group (IG) of whom both the YP and at least one parent participated in the entire program (IG 166, control group (CG) 134)
Summary
Young people (YP) growing up with a chronic condition face the complex process of transition from adolescence to adulthood. In addition to the normal developmental challenges such as moving out from home and starting a career, YP with an additional chronic condition must assume responsibility for their disease management. Health care structures ensuring a smooth transfer into adult care, as well as transition competencies of YP, should be strengthened [7,8,9]. This is in line with the views of youth. YP want more disease-specific knowledge to become a manager of their condition in daily life and they wish support and guidance in how to communicate their health related needs [10, 11]
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