Transitions in Glomerular Disease.

Abstract

Background: The transition from pediatric to adult care is a complex and challenging issue for increasing numbers of adolescents and young adults (AYA). Despite increasing attention to the transition of AYA with chronic medical conditions, there remain difficulties which vary by local resources, disease processes, and individual factors. There are also poorly understood factors regarding transition involving rare diseases, including glomerular disease. Specialties and organizations are working to evaluate and enhance the transition process; however, the variability in resources limits formation of a true consensus.

Summary: AYA with glomerular disease, broadly as chronic kidney disease and specifically with respect to diagnoses such as lupus nephritis, are vulnerable during the health care transition (HCT). Though young, many of these patients have severe disease with the loss of kidney function over their disease course and risk significant complications around the time of transition. Many facets make HCT challenging related to personal, caregiver, provider, and system factors. Despite difficulties, some groups have found success, largely in dedicated clinics designed to promote successful transition from pediatric to adult models of care. Society guidelines focus on a structured, intentional process providing continuity, with or without a dedicated transition clinic. Preparation, communication across the transition, and support for patients and providers with additional staff are all recommended aspects of transition from the International Society of Nephrology and International Pediatric Nephrology Association. Additionally, transition toolkits are available from several sources which can aid in developing a structured transition program for patients with glomerular disease.

Key messages: (1) There are many challenges in transitioning AYA patients with glomerular disease from pediatric to adult care. (2) HCT is a vulnerable period with increased risk of poor outcomes. (3) A successful HCT may be promoted by developing a structured process and/or program focused on preparation, communication, and support.