Transition in Sickle Cell Disease (SCD): A German Consensus Recommendation

Abstract

Sickle cell disease (SCD) is considered a rare disease in Germany. Due to the increasing prevalence, the acute and chronic morbidities associated with the disease and the sharp increase in the mortality rate of young adults, a need-based transition structure for patients with SCD in Germany is explicitly required. This is the first multicenter German consensus statement addressing the importance of implementing a standardized transition guideline that allows adolescents and young adults to safely transition from pediatric to adult care. Early identification of medical needs and intervention remains important in the context of chronic diseases. Effective measures can improve health care in general, as they lead to a reduction in disease and the consequential economic burden. It is noteworthy that improving structural barriers remains a key challenge even in highly developed countries such as Germany. Inclusion of these transition services for patients with SCD into the regular care of chronically ill adolescents and young adults should be ensured, as well as the coverage of costs associated with a structured transition process.

Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol

“…Additionally, the results of this review will inform iKT processes for our larger project on prioritising quality indicators to support the transition of youth with chronic physical, mental or developmental disabilities into adult care 45. Our systematic review identified 169 quality indicators, with most being developed without involving affected youth or caregivers 45 75–82. To bridge this gap, we are conducting a national multiknowledge user initiative to actively engage youth and their caregivers, healthcare providers and health system leaders in prioritising quality indicators for benchmarking and supporting transition.…”

Transition bei der Sichelzellkrankheit – Empfehlungen der Transitionsinitiative Sichelzellkrankheit

“…Ferner wurden Dokumentationsvorlagen erarbeitet, die inhaltlich über diese Kernaussagen hinausgehende Informationen bieten und bei der Gestaltung von Transitionsprozessen helfen sollen. Die Empfehlungen wurden zudem in einer englischsprachigen Publikation international veröffentlicht [10].…”

Special Issue “Personalized Medicine in Blood Disease of Children”

“…In the management of these hematological chronic diseases, transition care aims to provide continuous high-quality medical care without interruption. Alashkar F. et al provided the first multicenter German consensus statement, developed by an expert panel and addressing the importance of implementing a standardized transition guideline that allows adolescents and young adults with SCD to safely transition from pediatric to adult care in Germany [ 7 ].…”