Transition of care in inborn errors of immunity.

Abstract

This review outlines the principles of transition, summarizes current information about transition practices in inborn errors of immunity (IEI) and highlights general and specific considerations for transition of patients with these conditions. Recent surveys demonstrate the variability in access to and transition practices in IEI. Key challenges of transition in IEI from the perspective of healthcare professionals include lack of adult subspecialists, lack of access to holistic care and fragmentation of adult services. Limited research focused on IEI patient and carer perspectives highlight information gaps, poor coordination and difficulty adapting to adult healthcare structures as important challenges for smooth transition. Local policies and practices for transition in IEI are highly variable with limited assessment of outcomes or patient experience. There is a need for IEI-focused transition research and for development of national and international consensus statements to guide improved transition in IEI.