Transition of patients with interstitial lung disease from paediatric to adult care

Area of Science:

• Medical Research
• Public Health
• Pediatric Pulmonology

Background:

• The European Cooperation in Science and Technology (COST) Action CA16125 established a network for translational research in interstitial lung diseases (ILDs).
• Working Group 5 specifically addressed the critical transition of pediatric patients with ILDs to adult care systems.
• Current transition processes are often fragmented, lacking standardized protocols for information exchange and patient preparation.

Purpose of the Study:

• To evaluate the existing systems for transitioning pediatric patients with ILDs to adult care.
• To identify deficiencies and inconsistencies in current transition practices.
• To develop a model procedure to standardize and improve the transition process.

Main Methods:

• A survey was conducted among members of COST Action CA16125 Working Group 5 and affiliated specialists.
• The survey assessed current transition practices, information transfer, and patient preparation protocols.
• Analysis of survey data identified variability and inadequacy in existing transition systems.

Main Results:

• The survey revealed highly variable and inadequate transition systems for pediatric ILD patients to adult care in most centers.
• Most centers lack established, consistent procedures for information transfer and patient preparation.
• Significant deficiencies were noted in preparing patients for the shift to adult specialists and teams.

Conclusions:

• Immediate action is required to address the identified shortcomings in pediatric to adult ILD care transition.
• A model procedure for transition has been developed, drawing on best practices from centers with established pathways.
• The proposed model aims to ensure a smoother, more effective transition for patients with ILDs.