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

ABSTRACT:

Purpose

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. Here we present a structured transition pathway which is patient-focused and adoptable for different RDs.

Methods

The transition pathway for adolescents 16 years and older was 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

SUBMITTER: Grasemann C 

PROVIDER: S-EPMC10131406 | biostudies-literature | 2023 Apr

REPOSITORIES: biostudies-literature