Abstrakt

Background: In some chronic diseases structured education programs are integral part of pediatric long term care. Systematic reviews conclude that they have beneficial effects on somatic, psychosocial and healtheconomic outcomes. The current status of pediatric education programs in Germany is investigated and reviewed in this study according to two questions: 1) For which of the chronic somatic diseases do structured programs exist? 2) What are the barriers against providing education courses? Methods: Three sources of information were used: 1) expert workshops; 2) a structured survey among 178 experts nationwide; 3) webbased resources including guidelines as well as published education materials. Results: For 18 of 37 somatic chronic diseases structured education programs were identified. Seven of them were scientifically evaluated and published. For the remaining 19 diseases no structured programs could be identified. Main barriers against providing education courses mentioned by the experts were heterogeneity and low prevalence of the diseases, families’ little interest to participate, and lack of funding. Conclusion: For many of the diseases there is a need to educate young patients and their parents. In contrast for the majority of diseases no adequate evaluated concepts are available or reimbursed. To fill this gap structured programs have to be developed and evaluated. Furthermore creative concepts should be considered to establish education programs for young people with rare diseases nationwide.

Autoreninformation

Autoren

• G. Ernst¹
• R. Szczepanski²
• K. Lange¹

Abteilungen

• ¹ Medizinische Psychologie, Medizinische Hochschule Hannover,
• ² Kinderhospital Osnabrück

Adresse

Dr. Gundula Ernst
Medizinische Psychologie
Medizinische Hochschule Hannover
Carl-Neuberg-Straße 1
D–30625 Hannover
Email: [email protected]

Citation