The transition of patients with neuromuscular diseases: recommendations of the Spanish Society of Pediatric Neurology and the Spanish Society of Neurology. Endorsed by SENEP, SEN, and ASEM.

INTRODUCTION

The increased survival of adolescent patients with neuromuscular disease (NMD) entails the transition of these patients to adult healthcare. The process of care transition seeks to guarantee the continuity of healthcare, although it is not always well planned. This consensus statement aims to provide a conceptual framework for the care transition of young patients with NMD.

METHODS

A review of the literature on the subject was performed by NMD experts from the Spanish Society of Paediatric Neurology and the Spanish Society of Neurology, and a final consensus statement was drafted.

RESULTS

The care transition of patients with NMD requires a multidisciplinary team including paediatric and adult care professionals from the different specialties involved, as well as central services and social workers. Paediatric and adult neurologists are the main physicians responsible for the patients, but a case manager is needed to coordinate the process and liaise with patients. Care transition should begin at the age of 12-14 years and involves 3 stages: preparation of the patient (including psychosocial considerations), transfer (when the patient is medically stable and prepared for the process), and integration (with post-transfer follow-up). The process should be evaluated using specific scales and questionnaires for patients and healthcare professionals.

CONCLUSIONS

Care transition is a complex process requiring proper planning and coordination between professionals to improve health outcomes and avoid losses to follow-up. Its effective implementation requires institutional backing.