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.
Study Type
OBSERVATIONAL
Enrollment
64
Clinical and neuropsychological evaluations with standardised and internationally validated questionnaires and interviews, already used in clinical practice.
Fondazione Policlincio Universitario Agostino Gemelli
Roma, Italy
RECRUITINGAdult Clinic Attendance Rate
The percentage of patients (for each group) who attend their first scheduled adult clinic appointment, as organized by the pediatric team. The study aims to compare the Attendance Rate in adult care with a minimum of 6-12 months between case and control groups.
Time frame: 12 months
Return Rate:
The percentage of patients (for each group) who request a follow-up visit with their pediatric neurologist or return to the pediatric center after the transfer. The study aims to compare the Return Rate with a minimum of 6-12 months between the case and control groups.
Time frame: 12 months
Adult Clinic Attendance Rate and the EpiTRAQ
To Evaluate associations between Adult Clinic Attendance Rate and the EpiTRAQ score for each group.
Time frame: 36 months
Return Rate and the EpiTRAQ
To Evaluate associations between the Return Rate and the EpiTRAQ score for each group.
Time frame: 36 months
QOLIE-31
Assessment of the Quality of Life with questionnaire
Time frame: 36 months
Domenica Immacolata Battaglia
CONTACT
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.