Transition of patients with hereditary nephropathies from paediatric to adult care
Adolescents and young adults with chronic kidney disease (CKD), particularly those with genetic kidney diseases, face unique challenges as they transition from paediatric to adult nephrology care. This period is marked not only by changes in healthcare providers but also by significant developmental, psychosocial and medical complexities. In response, the European Renal Association Working Group on Genes and Kidney and the European Society for Paediatric Nephrology Working Group on Inherited Kidney Diseases have collaborated to develop practical advice for healthcare professionals involved in transition care across Europe and beyond. This document outlines key principles and offers practical recommendations to support a successful transition, emphasizing the need for early planning, patient education, individualized approaches and multidisciplinary coordination. Special considerations are highlighted for patients with genetic kidney diseases, including those with syndromic manifestations, reproductive implications and the need for continuity of care across specialties. The document also identifies knowledge gaps, proposes directions for future research and collaboration and encourages the implementation of transition protocols adapted to national and local healthcare systems. By harmonizing practices and fostering shared responsibility between paediatric and adult nephrology teams, this joint initiative aims to improve health outcomes, patient empowerment and long-term engagement in care for young people with CKD.
Authors
- Jaap W. Groothoff (ORCID: https://orcid.org/0000-0002-8467-3506)
- Roman-Ulrich Müller (ORCID: https://orcid.org/0000-0001-6910-0745)
- Laura R. Claus (ORCID: https://orcid.org/0000-0003-2364-4362)
- Elena Levtchenko (ORCID: https://orcid.org/0000-0002-8352-7312)
- María Vanessa Pérez-Gómez (ORCID: https://orcid.org/0000-0003-4558-5236)
- Max C. Liebau (ORCID: https://orcid.org/0000-0003-0494-9080)
- George-Claudiu Costea
- Lars Pape (ORCID: https://orcid.org/0000-0002-3635-6418)
- Luisa Klein
- Albertien M. van Eerde (ORCID: https://orcid.org/0000-0001-5953-5956)
- Émilie Cornec-Le Gall (ORCID: https://orcid.org/0000-0003-1958-4459)
- Sandrine Lemoine (ORCID: https://orcid.org/0000-0002-3460-2507)
Institutions
- Inserm (FR)
- Université de Bretagne Occidentale (FR)
- University of Cologne (DE)
- Royal Institution of Chartered Surveyors (GB)
- University Medical Center Utrecht (NL)
- Emma Kinderziekenhuis (NL)
- Hospices Civils de Lyon (FR)
- Essen University Hospital (DE)
- Universitätsklinikum Aachen (DE)
- Hôpital Edouard Herriot (FR)
- Hospital Universitario Fundación Jiménez Díaz (ES)
- Centre Hospitalier Régional Universitaire de Brest (FR)
- Cologne Excellence Cluster on Cellular Stress Responses in Aging Associated Diseases (DE)
- University Hospital Cologne (DE)
- Institutul Clinic Fundeni (RO)
- Génétique, Génomique Fonctionnelle et Biotechnologies (FR)
- Universidad Autónoma de Madrid (ES)
- RWTH Aachen University (DE)
Publication Details
- Journal
- Nephrology Dialysis Transplantation
- Published
- 2025-09-10
- DOI
- https://doi.org/10.1093/ndt/gfaf186
- Primary Topic
- Adolescent and Pediatric Healthcare
- Type
- article
- Field-Weighted Citation Impact
- 0.00