Transition From Pediatric to Adult Care in Epilepsy

Sponsor
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Study ID
NCT07592676
Status
Recruiting
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Conditions

Eligibility Criteria

Sex
ALL
Age
15 Years - N/A
Healthy Volunteers
Not accepted

Interventions

  • EpiTRAQ — DIAGNOSTIC_TEST
    Clinical and neuropsychological evaluations with standardised and internationally validated questionnaires and interviews, already used in clinical practice.

Study Details

The transition from pediatric to adult healthcare services for individuals with epilepsy represents a major clinical and organizational challenge. This complexity arises from the heterogeneity of the underlying epileptic disorders and the frequent presence of multiple comorbidities. Furthermore, the process entails a profound shift in the patient-physician relationship, which must be re-established to allow open discussion of sensitive issues and to adapt to a different model of care. In pediatric settings, medical care is predominantly family-centered, with parents actively involved in the decision-making process. In contrast, adult care is primarily patient-centered, emphasizing individual autonomy and self-management. The \*\*transition\*\* therefore constitutes a structured process designed to prepare adolescents and young adults for adult-oriented healthcare. It aims to enhance their understanding of epilepsy, increase awareness of available treatments, and develop self-management skills that help minimize the long-term psychosocial and medical impact of the disorder. The \*\*transfer\*\*, by contrast, refers to the formal handover of medical responsibility from pediatric to adult healthcare providers. While transfer is an event, transition represents a multidimensional process that should begin well before the actual shift of care. Over the past decade, several studies have sought to address the challenges associated with this critical phase by proposing transitional programs based on different organizational models. These structured interventions are designed to bridge the gap between pediatric and adult services, fostering continuity of care and improving clinical outcomes. A recent and promising example is a \*\*French transitional model\*\*, published following a retrospective study involving 70 persons with epilepsy (PWE). This model provided evidence supporting the feasibility and benefits of a dedicated, multidisciplinary transition program tailored to the specific needs of young individuals with epilepsy. In contrast, within the Italian scientific and clinical context-particularly in the field of epilepsy-no formally structured or validated transition program has yet been established. This gap underscores the need for the development of standardized national guidelines and the implementation of evidence-based transitional pathways. A well-designed transition program can significantly facilitate the adjustment of adolescents to adult neurological care, promoting therapeutic adherence, clinical stability, and psychosocial well-being. Ultimately, structured transitional care represents a crucial step toward ensuring continuity, safety, and quality of care for individuals with epilepsy as they move from pediatric to adult health services.

Key Dates

First listed
May 18, 2026
Start date
Nov 19, 2025
Status verified
Nov 2025
Primary completion
Dec 1, 2028
Completion
Dec 1, 2030

Study Design

Enrollment
64 participants (estimated)

Arms

  • Arm: CASE group
    The study will include persons with epilepsy (PWE) or epileptic syndromes, with or without mild intellectual disability, and individuals with tuberous sclerosis complex. Participants may have comorbidities that do not hinder their participation in transitional care. Eligible subjects must be ≥15 years at the time of the DH BRIDGE and regularly followed at Fondazione Policlinico Universitario A. Gemelli IRCCS (≥2 visits). Informed consent will be obtained from patients or guardians, and assent from minors, ensuring an ethically and clinically appropriate cohort for transitional care evaluation.
  • Arm: CONTROL group
    The control group will include adults (≥18 years) with epilepsy or epileptic syndromes, with or without mild intellectual disability, and individuals with tuberous sclerosis complex. Participants may have comorbidities that do not interfere with standard adult neurological care. All must be regularly followed at Fondazione Policlinico Universitario A. Gemelli IRCCS, with at least two documented visits. Informed consent will be obtained from each participant or, if incapacitated, from a legal guardian, ensuring a clinically comparable and ethically sound reference group.

Primary Outcome Measure

Adult Clinic Attendance Rate [ Time Frame: 12 months ]

Central Contacts

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