Transition of patients with hereditary nephropathies from pediatric to adult care

Abstract

Adolescents and young adults with chronic kidney disease (CKD), particularly those with genetic kidney diseases, face unique challenges as they transition from pediatric 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 ERA Working Group on Genes and Kidney and the ESPN 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 pediatric 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.

Keywords: chronic kidney disease; genetic kidney disease; inherited kidney disease; transfer; transition.