Transition From Pediatric to Adult Epilepsy Care

Last updated: January 14, 2025
Sponsor: IRCCS National Neurological Institute "C. Mondino" Foundation
Overall Status: Active - Recruiting

Phase

N/A

Condition

Epilepsy

Treatment

transition pathway to adult care services for epilepsy patients.

Clinical Study ID

NCT06778772
tra epi
  • Ages 17-18
  • All Genders

Study Summary

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.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Patients aged 17 or 18 years.

  • Diagnosed with focal or generalized epilepsy, regardless of etiology andneuropsychological, neuropsychiatric, or internal comorbidities.

  • Those for whom continued epileptology follow-up is required according to standardcare guidelines.

Exclusion

Exclusion Criteria:

  • Patients undergoing EEG only for the detection of EEG abnormalities without adiagnosis of epilepsy.

  • Patients for whom the last neuropsychiatric evaluation does not recommend continuedepileptology follow-up (patients considered "cured" from epilepsy according to ILAEguidelines).

Study Design

Total Participants: 90
Treatment Group(s): 1
Primary Treatment: transition pathway to adult care services for epilepsy patients.
Phase:
Study Start date:
June 01, 2023
Estimated Completion Date:
June 01, 2025

Study 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.

Connect with a study center

  • Child Neuropsichiatry

    Pavia, 27100
    Italy

    Active - Recruiting

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