Transition From Pediatric to Adult Epilepsy Care
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: transition pathway to adult care services for epilepsy patients..
- Who it may be relevant to
- Registry conditions: Epilepsy. Basic parameters: 17 years — 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Italy
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Transition to Adult Care in Epilepsy
Overview
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.
Detailed 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.
Interventions
- Behavioral transition pathway to adult care services for epilepsy patients.
This proposal aims to create a coordinated and shared transition pathway between pediatric and adult epilepsy services, addressing the needs of patients with chronic conditions. The primary objective is to assess the readiness of both patients and their caregivers for the transition, by comparing the Transition Readiness Assessment (TRAQ) questionnaire results between the last pediatric neuropsychiatric visit and the first adult neurology visit. Secondary objectives include evaluating changes in
Primary outcome measures
- readiness for transition evaluated throughout Transition Readiness Assessment Questionnaire (TRAQ) [Time frame: 1 year]
Secondary outcome measures (5)
- to measure the efficacy of the transition process from pediatric to adult care using Transition Success in Childhood and Adolescence (TSCA) [Time frame: 1 year]
- To assess quality of life among patients and their families using Pediatric Quality of Life Inventory (PedsQL) [Time frame: 1 year]
- Behavioral and emotional issues will be evaluated by comparing the results of the Achenbach Child Behavior Checklist (ABCL) and Achenbach System of Empirically Based Assessment (ASR) [Time frame: 1 year]
- To understand the factors influencing transition readiness and to identify potential barriers, the Transition NEEDS Questionnaire will be developed. [Time frame: 1 year]
- To assess the qualitative aspects of the transition phase througout a qualitative scale [Time frame: 1 year]
Eligibility 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).
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Case-only
Study locations
Italy · 1 center
- Child Neuropsichiatry — Pavia
Publications
- Andrade DM, Bassett AS, Bercovici E, Borlot F, Bui E, Camfield P, Clozza GQ, Cohen E, Gofine T, Graves L, Greenaway J, Guttman B, Guttman-Slater M, Hassan A, Henze M, Kaufman M, Lawless B, Lee H, Lindzon L, Lomax LB, McAndrews MP, Menna-Dack D, Minassian BA, Mulligan J, Nabbout R, Nejm T, Secco M, Sellers L, Shapiro M, Slegr M, Smith R, Szatmari P, Tao L, Vogt A, Whiting S, Carter Snead O 3rd. Epi PMID 28681381
- Borlot F, Tellez-Zenteno JF, Allen A, Ali A, Snead OC 3rd, Andrade DM. Epilepsy transition: challenges of caring for adults with childhood-onset seizures. Epilepsia. 2014 Oct;55(10):1659-66. doi: 10.1111/epi.12752. Epub 2014 Aug 28. PMID 25169716
- Giobbe V, Mule G, Zanaboni MP, Ballante E, Brondino N, Celario M, Ferraro F, Lomonaco D, Macina L, Mensi MM, Orlando I, Pasca L, Tartara E, Varesio C, De Giorgis V. Epi-STEP: A multidisciplinary transition model for patients with epilepsy. MethodsX. 2026 Apr 14;16:103914. doi: 10.1016/j.mex.2026.103914. eCollection 2026 Jun. PMID 42165072
Identifiers
NCT: NCT06778772 · tra epi