Epi-STEP: Wielodyscyplinowy model przejścia pacjentów z epilepsją z opieki pediatrycznej do dorosłych
Epi-STEP: A multidisciplinary transition model for patients with epilepsy
W skrócie
Badanie ocenia nowy program pomocny dla nastolatków z epilepsją, którzy przechodzą z leczenia u lekarza dziecięcego do lekarza dla dorosłych. Program angażuje zespół specjalistów (lekarzy, psychologów, pracowników socjalnych) aby wspierać pacjentów i ich rodziny w medycznych, psychicznych i społecznych potrzebach. Naukowcy zbierali dane od pacjentów, rodzin i lekarzy na trzech etapach: przy ostatniej wizycie u pediatry, przy pierwszej wizycie u dorosłoleka oraz 12 miesięcy później, aby sprawdzić czy program poprawia przygotowanie do dorosłego życia i samopoczucie pacjentów.
Oryginalny abstract (angielski)
UNLABELLED: 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.