Transition From Pediatric to Adult Epilepsy Care

IRCCS National Neurological Institute "C. Mondino" Foundation

Status: Enrolling

Conditions: Epilepsy

Treatments: Behavioral: transition pathway to adult care services for epilepsy patients.

Study type: Observational

Funder types: Other

Identifiers

NCT06778772

tra epi

Details and patient eligibility

About

The goal of this observational study is to assess the preparation of the caregiver and the patient for the transition, by comparing the results of the Transition Readiness Assessment (TRAQ) questionnaire at the time of the last pediatric neuropsychiatric visit, which is then repeated at the first adult epilepsy neurology visit.

The assessments will be conducted at the last evaluation at the pediatric epilepsy service and repeated at the first visit to the adult epilepsy service.

Full description

Epilepsy is a common pediatric neurological condition, with an incidence of 5-7 cases per 10,000 children and adolescents. In many cases, epilepsy does not remit in adulthood, requiring a transition from pediatric to adult epilepsy care. This transition should ideally be a planned and coordinated process addressing the patient's medical, psychosocial, and educational needs.

At the IRCCS C. Mondino Institute, around 700 pediatric epilepsy patients are followed, many with complex, genetically-based epilepsy and neuropsychiatric comorbidities. Transition programs, though essential, are challenging to implement, as pediatric and adult services often operate independently.

The transition period offers an opportunity for reassessment of care and the management of comorbidities, as well as counseling on aspects like education and independence. Psychiatric comorbidities can complicate the transition and negatively impact patients' quality of life. The Mondino Institute has developed a collaborative transition model involving both pediatric neuropsychiatrists and adult neurologists to address these challenges and better manage psychiatric comorbidities, ensuring a smoother transition to adult care.

The primary objective is to improve the multidisciplinary care of patients with epilepsy and psychiatric comorbidities, by implementing specific diagnostic and therapeutic evaluations for these comorbidities in patients transitioning from the pediatric and adolescent epilepsy center to the adult epilepsy service.

Secondary objectives include:

Defining the management pathway for psychiatric comorbidities in patients transitioning to adult epilepsy services, by identifying suitable structures and professionals for psychiatric and rehabilitative follow-up.

Optimizing the selection of specific pharmacological therapies for medium- to long-term maintenance.

In summary, the focus is on improving the care and treatment of epilepsy patients with psychiatric comorbidities, ensuring proper follow-up and therapeutic planning as they transition from pediatric to adult care.

Enrollment: 90 estimated patients

Sex: All

Ages: 17 to 18 years old

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

**Inclusion Criteria:**

• Patients aged 17 or 18 years.
• Diagnosed with focal or generalized epilepsy, regardless of etiology and neuropsychological, neuropsychiatric, or internal comorbidities.
• Those for whom continued epileptology follow-up is required according to standard care guidelines.

**Exclusion Criteria:**

• Patients undergoing EEG only for the detection of EEG abnormalities without a diagnosis of epilepsy.
• Patients for whom the last neuropsychiatric evaluation does not recommend continued epileptology follow-up (patients considered "cured" from epilepsy according to ILAE guidelines).