ERKNet

The European Rare Kidney Disease Reference Network

  

Research Project

Project Title:

TRANSNephro Study

Project Type:

Clinical Trial, Enrolment ongoing

Disease group(s):

Pediatric kidney transplantation

Project Summary:

Background
Transition from pediatric nephrology to adult internist nephrology is not yet a standardized procedure. Consequently, there are increased risks of transplanted malfunctioning, deterioration and loss.
Methods/Design
In phase I of the study, we are evaluating the present patient transition situation in all existing German pediatric and nephrologic departments (n=17), including an evaluation of the present situation in the view of patients, physicians, nurses and psycho-social support staff. In phase II, we will conduct a prospective, randomized study in which we compare current unstructured transition (control group) to structured transition (intervention group). The structured transition approach to be applied integrates the core elements of the “Berliner TransitionsProgramm (BTP)”, which has not yet been established in German (pediatric) nephrology departments, in combination with two facilitating smartphone apps. The primary end point of this study will be therapy adherence, as reflected by group variation coefficients of immunosuppressive agent levels. As a secondary outcome, we will compare patients’ self-reported quality of life, satisfaction of patients and their parents with each transition model, and utilization of patient-centered health care componeents. These secondary parameters will be assessed with established instruments or with instruments developed (and pilot tested) in phase I of the project. The long-term goal of this work is to provide a model of structured transition from pediatric to adult care of adolescent nephrology patients in order to improve the transplant survival and patient well-being.

Lead principal investigator(s):

Lars Pape, Hannover

Co-investigator(s):

Martin Kreuzer, Hannover

Project Period:

07/2015   -   12/2019

Sponsors:

Non-profit foundation

Project web page:

www.transnephro.de

ClinicalTrials.gov:

ISRCTN22988897

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