Survey on management of transition and transfer from pediatric- to adult-based care in pediatric kidney transplant recipients in Europe

Abstract

Background. Transition from pediatric- to adult-based healthcare is a challenging period and bears a high risk of medication nonadherence and transplant loss in adolescents and young adults after kidney transplantation. Yet, it remains unclear how the 2011 International Society of Nephrology (ISN)/International Pediatric Nephrology Association (IPNA) guidelines on transition are implemented in practice and which healthcare transition modalities are currently used in Europe. Methods. We performed an online survey inviting all members of the European Society of Paediatric Nephrology mailing list to participate. Adherence to ISN/IPNA guidelines was scored with a maximum of 15 points. Results. Thirty-nine centers from 24 countries accounting for approximately 2500 children after kidney transplantation participated in the survey. At 3 centers, patients remained under pediatric care for their whole life, and 5 centers did not use any transition procedure. From the remaining 31 centers, 82% confirmed the existence of at least 1 unwritten transition procedure. None of these centers used ITor social media for patient training in transition. Specialized transition clinics are held at 15 of 31 centers for the patients. Most patients were transferred at 16 to 21 years of age. Transfer age was subject to regulation at 20 of 36 centers. Median score of guidelines adherence was 10 (range, 0-14). The adherence score was significantly correlated with gross national income (r 2 = 0.631, P < 0.0001). Conclusions. The 2011 ISN/IPNA guidelines on transition are implemented insufficiently in European pediatric nephrology centers. Therefore, further development is needed, and the use of information technology and social media should be promoted.