Transition for adolescents with a rare disease: results of a nationwide German project.
Corinna GrasemannJakob HoeppnerPeter BurgardMichael M SchündelnNora MatarGabriele MüllerHeiko KrudeReinhard BernerMin Ae Lee-KirschFabian H HauckKerstin WainwrightSylvana BaumgartenJanet AtingaJens J BauerEva MankaJulia KörholzCordula KiewertAndré HeinenTanita KretschmerTobias KurthJanna MittnachtChristoph SchrammChristoph KleinHolm GraessnerOlaf HiortAnia C MuntauAnnette GrütersGeorg Friedrich HoffmannDaniela ChoukairPublished in: Orphanet journal of rare diseases (2023)
The described transition pathway succeeds to improve health literacy in adolescents with RDs and can be implemented by paediatric care teams in any RD specialty. Patient empowerment was mainly achieved by individualized training and counselling.