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Transition for adolescents with a rare disease: results of a nationwide German project

by informer
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The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic diseases and poses even more difficulties in the context of rare diseases (RDs). Paediatric care teams are challenged to deliver adolescent-appropriate information and structures. In this report, a structured transition pathway, which is patient-focused and adoptable for different RDs, is presented.

The transition pathway for adolescents 16 years and older is developed and implemented as part of a multi-centre study in 10 university hospitals in Germany. Key elements of the pathway included: assessment of patients’ disease-related knowledge and needs, training/educational and counselling sessions, a structured epicrisis and a transfer appointment jointly with the paediatric and adult specialist. Specific care coordinators from the participating university hospitals are in charge of organization and coordination of the transition process.

The transition pathway described in this report succeeds to improve health literacy in adolescents with RDs and can be implemented by paediatric care teams in any RD specialty. Patient empowerment is mainly achieved by individualized training and counselling. Read the full article here.

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