Transition: from paediatric to adult care

What is health care transition?

Transition is a planned, purposeful and gradual process that supports adolescents and young adults as they move from paediatric to adult healthcare services. It focuses on preparing young people medically, psychosocially and educationally for adult‑oriented care, while promoting autonomy, self‑management and continuity over time.

This differs from transfer, which refers to the specific act of handing over care from a paediatric to an adult service at a defined moment. Transfer is only one element of effective transition, but it is often the most critical. 

ERN RARE‑LIVER adopts a life‑course approach, embedding transfer within a broader, well‑prepared transition process. At the same time, the Working Group deliberately focuses on getting transfer right, as this is where failures most commonly occur. Ensuring that young people clearly know when, where and to whom their care is transferred is fundamental; without a successful transfer, earlier transition preparation risks losing its impact.

 

Why is transition important?

A good transition is essential to ensure continuity, safety and quality of care as young people move from paediatric to adult healthcare services. It helps adolescents develop independence, supports treatment adherence, and ensures that critical medical information and specialist expertise are maintained over time.

When transition is poorly organized or absent, young people are at higher risk of being lost to follow‑up, disengaging from care, experiencing gaps in treatment, or facing avoidable health deterioration. This is particularly relevant in rare diseases, where care is complex and lifelong, and expertise is often concentrated in specialist centers.

 

Minimal criteria and practical tools

In February 2023, the ERN RARE‑LIVER Health Care Transition Working Group organized an international workshop on transition, funded by the Networking Support Scheme of the European Joint Programme on Rare Diseases. The workshop focused on defining minimal criteria for high‑quality transition of care for people living with rare liver diseases:

Paediatric to adult care transfer in rare liver diseases

Building on the outcomes of this workshop, the Working Group prioritized practical, implementable actions to support clinical teams across ERN RARE‑LIVER. One key outcome is the development of a structured transfer document, designed to support effective communication and continuity when patients move from paediatric to adult liver services:

Transition of healthcare template

In addition, the Working Group is:

  • Developing an adaptable patient passport to support patient empowerment and information continuity;

  • Exploring how to organise successful joint consultations between paediatric and adult care teams, adaptable to different healthcare systems.

EASL  2025 – A Toolkit for adult hepatologists

 

Young people as partners

ERN RARE‑LIVER works closely with the ERN Youth Panel to ensure that transition activities are informed by the experiences and priorities of young people living with rare liver diseases, with a focus on partnership, autonomy and engagement.

In parallel, the Health Care Transition Working Group also incorporates the paediatric perspective, including the views and needs of parents and caregivers, particularly in earlier phases of transition. This complements the Youth Panel’s explicit focus on young patients themselves and supports a balanced approach across developmental stages.

 

Cross‑working group collaboration within ERN RARE‑LIVER

The Transition of Care Working Group collaborates closely with other ERN RARE‑LIVER working groups, including the Pregnancy Working Group and multiple disease‑specific working groups. These collaborations support alignment across the life course and address shared challenges related to continuity of care:

Cross‑ERN collaboration

ERN RARE‑LIVER also has a coordination role within the overarching ERN Health Care Transition Working Group, which brings together representatives from all European Reference Networks. Through this role, ERN RARE‑LIVER contributes to cross‑ERN alignment, shared learning and the development of coherent transition approaches across rare diseases in Europe.