Transition structures and timing of transfer from paediatric to adult-based care after kidney transplantation in Germany: a qualitative study

Abstract

ObjectivesIt is known that transition, as a shift of care, marks a vulnerable phase in the adolescents’ lives with an increased risk for non-adherence and allograft failure. Still, the transition process of adolescents and young adults living with a kidney transplant in Germany is not well defined. The present research aims to assess transition-relevant structures for this group of young people. Special attention is paid to the timing of the process.SettingIn an observational study, we visited 21 departments of paediatric nephrology in Germany. Participants were doctors (n=19), nurses (n=14) and psychosocial staff (n=16) who were responsible for transition in the relevant centres. Structural elements were surveyed using a short questionnaire. The experiential viewpoint was collected by interviews which were transcribedverbatim before thematic analysis was performed.ResultsThis study highlights that professionals working within paediatric nephrology in Germany are well aware of the importance of successful transition. Key elements of transitional care are well understood and mutually agreed on. Nonetheless, implementation within daily routine seems challenging, and the absence of written, structured procedures may hamper successful transition.ConclusionsWhile professionals aim for an individual timing of transfer based on medical, social, emotional and structural aspects, rigid regulations on transfer age as given by the relevant health authorities add on to the challenge.Trial registration numberISRCTN Registry no 22988897; results (phase I) and pre-results (phase II).

Current management of transition of young people affected by rare renal conditions in the ERKNet

“…Most ERKNet centres and countries are covered, yet the survey lacks input from Sweden and Finland, which can bias the results of the North-South divide statistics. However, practice of transition can vary widely even within the same country as recent studies show [15,[26][27][28].…”

Survey on Management of Transition and Transfer From Pediatric- to Adult-based Care in Pediatric Kidney Transplant Recipients in Europe

“…Despite the fact that most European countries are covered, the survey does not include all centers for pediatric KTx in Europe, and one should keep in mind that practice of transition can vary widely in the same country as recent studies show. 19 , 32 …”

“…The survey was developed as part of the TRANSNephro project. 3 , 9 , 19 The initial study protocol 9 was modified, and the amendment was approved by Hannover Medical School Ethics Committee. The study was then approved by the council of the ESPN.…”

Immunsuppressiva-Adhärenz nach Transplantation

“…Unter der Transitionsphase versteht man den Übergang der Patienten von der pädiatrischen Versorgung in die Erwachsenenmedizin. Es ist bekannt, dass der Wechsel des Behandlerteams, für den zudem auch keine einheitlichen Strukturen in den verschiedenen Transplantationszentren bestehen, mit einem erhöhten Risiko für Non-Adhärenz und in den auf die Transition folgenden Jahren mit einer erhöhten Rate von Nierentransplantatversagen assoziiert ist [39]. Um dieses Problem zu adressieren, werden in jüngster Zeit immer größere Bemühungen unternommen.…”