Transition From Pediatric to Adult Epilepsy Care

NCT06778772 | Recruiting

• 1 other identifier: tra epi
• Study Type: observational
• Target: 90
• Locations: 1 country
• Sites: 1

Brief 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.

Conditions

Epilepsy

Keywords

epilepsy; transition

Outcome Measures

Primary Outcomes (1)

• readiness for transition evaluated throughout Transition Readiness Assessment Questionnaire (TRAQ)

  To evaluate the preparation of patients and caregivers for the transition process, the Transition Readiness Assessment Questionnaire (TRAQ) will be assessed, and scores will be compared across T0, T1, and T2. The TRAQ has a scale range from 0 to 5, where: 0 indicates insufficient readiness for transition; 5 indicates optimal readiness for transition. Higher scores indicate better preparation for the transition process, while lower scores suggest poorer readiness and a need for further support.

  1 year

Secondary Outcomes (5)

• to measure the efficacy of the transition process from pediatric to adult care using Transition Success in Childhood and Adolescence (TSCA)

  1 year

• To assess quality of life among patients and their families using Pediatric Quality of Life Inventory (PedsQL)

  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)

  1 year

• To understand the factors influencing transition readiness and to identify potential barriers, the Transition NEEDS Questionnaire will be developed.

  1 year

• To assess the qualitative aspects of the transition phase througout a qualitative scale

  1 year

Interventions

transition pathway to adult care services for epilepsy patients. BEHAVIORAL

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 emotional-behavioral issues and quality of life, using the CBCL, YSR, and PedsQoL questionnaires. Assessments will be conducted at both pediatric and adult epilepsy services. The ultimate goal of the transition protocol is to improve care and outcomes for adolescents and young adults during the transition, focusing on emotional-behavioral and psychosocial aspects, and to develop a best-practice model that could influence future guidelines.

Eligibility Criteria

• Age: 17 Years - 18 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Probability Sample

Study Population

patient with epilepsy primary care clinic

You may qualify if:

• 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.

You may not qualify if:

• 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).

Sponsors & Collaborators

• IRCCS National Neurological Institute "C. Mondino" Foundation: lead

Study Sites (1)

Child Neuropsichiatry

Pavia, 27100, Italy

RECRUITING

Related Publications (2)

• 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. Epilepsy: Transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force. Epilepsia. 2017 Sep;58(9):1502-1517. doi: 10.1111/epi.13832. Epub 2017 Jul 6.

  PMID: 28681381 BACKGROUND

• 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 BACKGROUND

MeSH Terms

Conditions

Epilepsy

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases

Study Officials

• Valentina De Giorgis, MD

  Child and Adolescent Epileptology

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Valentina De Giorgis

CONTACT

0382380289; valentina.degiorgis@mondino.it

Cinzia Fattore, MD

CONTACT

0382380385; cinzia.fattore@mondino.it

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 8, 2025
• First Posted: January 16, 2025
• Study Start: June 1, 2023
• Primary Completion: May 1, 2025
• Study Completion: June 1, 2025
• Last Updated: January 16, 2025

Record last verified: 2025-01

Locations

IT (1)