Epi-STEP: A multidisciplinary transition model for patients with epilepsy

AI Summary

Multidisciplinary Epi-STEP model provides a holistic care pathway addressing medical, psychological and social needs of adolescents and caregivers during transition to adult epilepsy services.
Monocentric observational study recruits patients aged 16 plus with assessments at T0, T1 and T2 using standardized instruments and bespoke questionnaires.
Study evaluates transition utility, readiness for adult care and psychosocial wellbeing, guiding targeted interventions and potential adaptation to other chronic conditions.

MethodsX. 2026 Apr 14;16:103914. doi: 10.1016/j.mex.2026.103914. eCollection 2026 Jun.

ABSTRACT

By involving a multidisciplinary team, the model creates a holistic care pathway that supports the medical, psychological, and social needs of adolescents and their caregivers during the transition process. Epilepsy is a prevalent neurological disorder in childhood, and many childhood-onset epilepsy cases persist into adulthood, necessitating a transition from pediatric to adult care. This transition requires a structured process to address medical and psychosocial l needs; however, many epilepsy centers lack formal programs to support this transition, and there is a need for a standardized approach to ensure that patients and their families are adequately prepared. Therefore, we developed the Epi-STEP protocol, a multidisciplinary transition model for young adults with epilepsy and their caregivers. This monocentric observational study will assess the potential usefulness of the transition process for patients with epilepsy aged 16 and older, recruited from the Child Neuropsychiatry Unit at the IRCCS Mondino Foundation. Data will be collected at three time points: at the last visit at the Child Neuropsychiatry Unit (T0), at the first visit at the Adult Epileptology Service (T1), and at a 12-month follow-up (T2). Assessment tools will include both standardized instruments and ad-hoc questionnaires specifically developed to comprehensively evaluate the transition process and will be completed by patients, caregivers, and healthcare professionals. This study will evaluate the utilityof the transition process, assessing readiness for adult care and psychosocial well-being of the patients involved. Findings will guide targeted interventions to improve clinical outcomes, enhance transition readiness, and provide better support for patients and families during this critical phase. Finally, this model designed for epilepsy could be further adapted to other chronic conditions requiring structured transition regimens.

TRIAL REGISTRATION: The study has been registered at ClinicalTrials.gov (registration number NCT06778772) on the 16th January 2025.

PMID:42165072 | PMC:PMC13185769 | DOI:10.1016/j.mex.2026.103914

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