Transition from pediatric to adult care system in patients with complex epilepsies: Necker model for transition evaluated on 70 consecutive patients

Abstract

Objective: Complex epilepsies such as epileptic and developmental encephalopathies require multidisciplinary care throughout life. A coordinated transition program is therefore essential to provide optimal support for patients leaving pediatric for adult care. The aim of this study is to describe and evaluate our transition program for complex epilepsies, focusing on the last step in this program, that is, the multidisciplinary transition day hospital (MTDH).

Methods: We performed a retrospective observational study including patients with complex epilepsies who underwent the full steps of the transition program at Necker-Enfants Malades Hospital between May 2021 and June 2023, with a follow-up until February 2024. We described the cohort and detailed the interventions performed during the MTDH including medical, medicosocial, educational, daily life abilities, and laboratory and imaging assessments with the participation of one member of the adult team. We evaluated two indicators of our program: (1) the "adult first clinic attendance rate," defined by the percentage of patients attending their first adult clinic; and (2) the "return rate," defined by the percentage of patients who requested a pediatric encounter after their transfer.

Results: Our cohort included 70 patients with a mean age of 19.1 years (interquartile range = 16.3-19.5). Eighty percent had an epilepsy syndrome diagnosis; 72.8% were treated with three or more antiseizure medications. All patients had their appointment at the adult clinic within 6 months of the day hospital, and only two families requested a pediatric encounter after the transfer.

Significance: The transition program is key for an optimal transfer of patients with complex epilepsies to adult care. It requires a comprehensive multidisciplinary approach and provides a complete summary of the medical record. Our program secures a smooth landing in adult care and is a promising model to better manage the challenging transition process, especially in patients with complex epilepsy.

Keywords: DEEs; adolescent; outcome; transition; transition passport.

FIGURE 1

The three phases of the multidisciplinary transition program at Necker–Enfants Malades Hospital, starting at 13–14 years and ending at 17–20 years with the multidisciplinary transition day hospital (MTDH). IQR, interquartile range.

FIGURE 2

The transition passport. This document summarizes all pivotal information of the patient as listed. APGAR, Adaptability, Partnership, Growth, Affective, and Resolve; ASM, antiseizure medication; CreER, Reference Center for Rare Epilepsies; CT, computed tomography; EEG, electroencephalography; KD, ketogenic diet; MRI, magnetic resonance imaging; PET, positron emission tomography; SEEG, stereo‐EEG; SPECT, single photon emission computed tomography; VitD, vitamin D; VNS, vagus nerve stimulation; HC: head circumference, ALD: French acronym for chronic disease recognition (Affection Longue Durée), MDPH: French acronym for the disability evaluation and recognition by the French authorities (Maison Departementale des Personnes Handicapées).

FIGURE 3

The referral institutions, centers, or physicians after the finalization of the transition process. The four levels of adult care are based on patient needs, on the institutions' or physicians' expertise, and on the geographical proximity of the adult facility to the residence of the patient as an adult. CReER, Reference Center for Rare Epilepsies.