# Transition from childhood to adulthood in neuromuscular disorders: results from the ERN EURO-NMD survey

## TL;DR

This study shows that transition care for neuromuscular disease patients in Europe is inconsistent and needs better coordination and resources.

## Contribution

The paper provides a comprehensive survey of transition practices across Europe and highlights the need for a unified approach.

## Key findings

- Only 29.9% of healthcare centers have structured transition protocols.
- Most clinicians believe transition should start at 15–16 years, but it often begins at 17–18 years.
- Barriers include insufficient staff, funding, and poor communication between teams.

## Abstract

Neuromuscular diseases (NMDs) are rare, progressive conditions that require lifelong, multidisciplinary care. Advances in diagnosis and treatment have increased survival into adulthood, making the transition from paediatric to adult care a critical stage of its management. However, evidence suggests that transition practices remain inconsistent across Europe. This study aimed to map and evaluate the current transition practices for patients with NMDs across Europe.

A cross-sectional survey was conducted by the European Reference Network for Rare Neuromuscular Diseases (ERN EURO-NMD) to assess current transition practices across European healthcare providers (HCPs). Sixty-seven healthcare professionals from 20 countries participated. The survey explored training provision, transition structures, professional involvement, timing, psychosocial support, and perceived barriers. Both descriptive and thematic analyses were performed.

Only 29.9% of respondents reported structured transition protocols, and fewer than one in five (17,9%) had received formal training in transition care. The age to initiate transition was reported for most centres at 17–18 years, even though most clinicians identified 15–16 years as the ideal starting point. Multidisciplinary collaboration was present in some centres but was inconsistently implemented. Barriers included insufficient staff, lack of funding, inadequate adult care services, and poor inter-team communication. Post-transfer feedback to paediatric teams was limited. Despite these challenges, 59.7% of respondents believed that ERN EURO-NMD could facilitate improvement in transition care.

Transition care for patients with NMDs in Europe remains fragmented and under-resourced. To ensure continuity and improve outcomes, structured, multidisciplinary transition models are needed. A European roadmap, coordinated by ERN EURO-NMD, could harmonise practices, support professional training, and guide policy development across member states.

The online version contains supplementary material available at 10.1186/s13023-025-04144-x.