Current Transition Practice for Primary Immunodeficiencies and Autoinflammatory Diseases in Europe: a RITA-ERN...

Area of Science:

• Pediatric Rheumatology and Immunology
• Healthcare Transition Services
• Chronic Disease Management

Background:

• Children with inborn errors of immunity (IEI) require lifelong care due to the absence of curative treatments.
• Effective transition from pediatric to adult healthcare services is crucial for improving treatment adherence and long-term outcomes in IEI patients.
• The availability and nature of transition services for young people with IEI in Europe are not well-documented.

Purpose of the Study:

• To investigate the prevalence and current practices of transition services for young individuals with IEI in Europe.
• To encompass both primary immunodeficiencies (PID) and systemic autoinflammatory disorders (AID) within the scope of the study.
• To identify existing transition models and potential gaps in European healthcare systems for IEI patients.

Main Methods:

• A survey was developed by the European Reference Network on immunodeficiency, autoinflammatory, and autoimmune diseases Transition Working Group.
• The survey was electronically distributed to pediatric centers across Europe that manage children with IEI.
• Responses were collected from 52 centers across 17 countries, providing data on transition practices.

Main Results:

• All surveyed services transitioned patients to adult care, primarily to specialized PID or AID centers.
• The transition process typically begins between ages 16-18, with transfer to adult care around ages 18-20.
• While most centers reported defined transition processes and joint appointments, standardized national guidelines were rarely available for PID and AID.

Conclusions:

• Transition services for children with IEI are established in many European countries.
• A significant need exists for standardized guidelines to ensure best practices in IEI transition care across Europe.
• Further development of national and international protocols is recommended to optimize the transition process for IEI patients.