Transition From Pediatric to Adult Epilepsy Care

Официальное название

Transition to Adult Care in Epilepsy

Обзор

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.

Подробное описание

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.

Вмешательства

• Поведенческое 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

Первичные конечные точки

• readiness for transition evaluated throughout Transition Readiness Assessment Questionnaire (TRAQ) [Срок оценки: 1 year]

Вторичные конечные точки (5)

• to measure the efficacy of the transition process from pediatric to adult care using Transition Success in Childhood and Adolescence (TSCA) [Срок оценки: 1 year]
• To assess quality of life among patients and their families using Pediatric Quality of Life Inventory (PedsQL) [Срок оценки: 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) [Срок оценки: 1 year]
• To understand the factors influencing transition readiness and to identify potential barriers, the Transition NEEDS Questionnaire will be developed. [Срок оценки: 1 year]
• To assess the qualitative aspects of the transition phase througout a qualitative scale [Срок оценки: 1 year]

Критерии участия

\*\*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).

Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.

Здоровые добровольцы: Нет

Дизайн исследования

Модель наблюдения

Только случаи

Центры проведения

Италия · 1 центр

• Child Neuropsichiatry — Pavia

Публикации

• 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

Идентификаторы

NCT: NCT06778772 · tra epi

Первоисточники (государственные реестры)

• ClinicalTrials.gov (NIH, США)

Открыть это исследование на ClinicalTrials.gov ↗