NCT03817229

Brief Summary

Fifty-eight percent of children with new-onset epilepsy do not take their antiepileptic drugs (AEDs) as prescribed, which is associated with continued seizures, mortality, poor quality of life, and high healthcare costs. Evidence-based adherence interventions are lacking and critically needed, especially for children with epilepsy, who represent an underserved population in pediatrics. The current proposal is a mHealth sequential, multiple assignment, randomized trial (SMART) focused on providing education, automated digital reminders, and individualized adherence feedback, as well as teaching problem-solving skills, with the goal of improving adherence and quality of life and decreasing seizures and health care utilization.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
268

participants targeted

Target at P75+ for not_applicable

Timeline
Completed

Started Apr 2019

Longer than P75 for not_applicable

Geographic Reach
1 country

4 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

December 27, 2018

Completed
29 days until next milestone

First Posted

Study publicly available on registry

January 25, 2019

Completed
3 months until next milestone

Study Start

First participant enrolled

April 15, 2019

Completed
5.2 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

June 15, 2024

Completed
2 months until next milestone

Study Completion

Last participant's last visit for all outcomes

August 1, 2024

Completed
1.2 years until next milestone

Results Posted

Study results publicly available

October 30, 2025

Completed
Last Updated

October 30, 2025

Status Verified

September 1, 2025

Enrollment Period

5.2 years

First QC Date

December 27, 2018

Results QC Date

June 2, 2025

Last Update Submit

October 1, 2025

Conditions

Keywords

adherencemHealtheHealthchildrencaregiverscompliance

Outcome Measures

Primary Outcomes (1)

  • Anti-seizure Medication Adherence Rate

    Electronically monitored adherence, as measured by the Simplemed+ pillboxes or Adheretech bottles will be used as the primary outcome to calculate an adherence rate. A monthly adherence rate for antiseizure medication is calculated for Month 5, which ranges from 0-100%, with higher scores reflecting higher adherence.

    Stage 1 (Month 5)

Secondary Outcomes (21)

  • Antiseizure Medication Adherence Rate

    Month 8

  • Antiseizure Medication Adherence Rate

    Month 7 (Stage 2)

  • Global Assessment of Severity of Epilepsy

    Months 8-13

  • PedsQL Epilepsy Module-Impact (Parent Report)

    Month 8

  • Seizure Severity Adapted for Children Scale-Total Score

    Month 8

  • +16 more secondary outcomes

Study Arms (3)

Control Group

ACTIVE COMPARATOR

mHealth education module and automated digital reminders

Behavioral: Education microlearning sessionsBehavioral: Automated digital reminders

Treatment Group-Individualized Feedback Only

EXPERIMENTAL

mHealth education module, automated digital reminders, and individualized adherence feedback.

Behavioral: Education microlearning sessionsBehavioral: Automated digital remindersBehavioral: Individualized Adherence Feedback Report

Treatment Group-Individualized Feedback + Problem-Solving

EXPERIMENTAL

mHealth education module, automated digital reminders, individualized adherence feedback, and 2 problem solving sessions with a therapist.

Behavioral: Education microlearning sessionsBehavioral: Automated digital remindersBehavioral: Problem-solving mHealth moduleBehavioral: Individualized Adherence Feedback Report

Interventions

mHealth education microlearning sessions

Control GroupTreatment Group-Individualized Feedback + Problem-SolvingTreatment Group-Individualized Feedback Only

reminders from electronic monitors based on texts or lights/chimes

Control GroupTreatment Group-Individualized Feedback + Problem-SolvingTreatment Group-Individualized Feedback Only

mhealht problem solving module with 2 telehealth sessions with a therapist

Treatment Group-Individualized Feedback + Problem-Solving

Individual Adherence Feedback reports sent to parents weekly

Treatment Group-Individualized Feedback + Problem-SolvingTreatment Group-Individualized Feedback Only

Eligibility Criteria

Age2 Years - 12 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17)

You may qualify if:

  • Children ages 2-12 years
  • Epilepsy diagnosis \< 2 years
  • Ability to read/speak English

You may not qualify if:

  • Major comorbid neurodevelopmental or medical disorders (e.g., Autism, diabetes)
  • Plan to wean AEDs for 18 months

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (4)

Childrens Hospital of Orange County

Orange, California, 92868, United States

Location

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, 45229, United States

Location

Nationwide Children's Hospital

Columbus, Ohio, 43205, United States

Location

Medical University of South Carolina

Charleston, South Carolina, 29425, United States

Location

Related Publications (1)

  • Wagner JL, Patel AD, Huszti H, Schmidt M, Smith G, Bhatia S, Guilfoyle SM, Lang A, Buschhaus S, Williams S, Ardo J, Davidian M, Modi AC. The eACT study design and methods: A sequential, multiple assignment, randomized trial of A novel adherence intervention for youth with epilepsy. Contemp Clin Trials. 2024 Dec;147:107739. doi: 10.1016/j.cct.2024.107739. Epub 2024 Nov 10.

MeSH Terms

Conditions

EpilepsyPatient Compliance

Condition Hierarchy (Ancestors)

Brain DiseasesCentral Nervous System DiseasesNervous System DiseasesPatient Acceptance of Health CareTreatment Adherence and ComplianceHealth BehaviorBehavior

Limitations and Caveats

Health utilization data were not analyzed as the trial took place during the COVID-19 pandemic which affected the comfort of participants going to their emergency room departments and/or inpatient hospitalizations.

Results Point of Contact

Title
Avani Modi, Ph.D.
Organization
Cincinnati Children's Hospital Medical Center

Study Officials

  • Avani Modi, Ph.D.

    Children's Hospital Medical Center, Cincinnati

    PRINCIPAL INVESTIGATOR

Publication Agreements

PI is Sponsor Employee
No
Restrictive Agreement
No

Study Design

Study Type
interventional
Phase
not applicable
Allocation
RANDOMIZED
Masking
DOUBLE
Who Masked
CARE PROVIDER, INVESTIGATOR
Masking Details
The PI will not be notified of group status or details of participants. The healthcare provider will also not know which group participants are randomized to.
Purpose
TREATMENT
Intervention Model
PARALLEL
Model Details: This a 2-stage, sequential, multiple assignment, randomized trial (SMART) . In Stage 1 (three months long), non-adherent caregivers (\< 95%) will be randomized to a mHealth education module and automated digital reminders (control) or the mHealth education module, automated digital reminders, and individualized adherence feedback based on real-time adherence monitoring (treatment) to address the primary barrier of forgetting. At the beginning of Stage 2 (two months long), caregivers randomized to treatment who do not achieve adherence \> 95% (response) by the end of Stage 1 will be re-randomized to either continued individualized adherence feedback or individualized adherence feedback augmented with three mHealth problem-solving modules (translated from the PIs existing RCTs) with a therapist.
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

December 27, 2018

First Posted

January 25, 2019

Study Start

April 15, 2019

Primary Completion

June 15, 2024

Study Completion

August 1, 2024

Last Updated

October 30, 2025

Results First Posted

October 30, 2025

Record last verified: 2025-09

Data Sharing

IPD Sharing
Will share

Prior to sharing, all data will be de-identified in a HIPAA-compliant fashion. Data sets will be carefully reviewed to make sure that information such as age and gender cannot be used to gather additional information that could potentially identify individual subjects. All modalities of data will be shared, including raw and aggregate data. Descriptors for all variables shared will be included to prevent misuse or confusion. Any analytical methods utilized to assess the data will be defined in shared formats. In addition, treatment manuals related to problem-solving and mHealth modules will also be shared after completion of the trial for future use.

Shared Documents
STUDY PROTOCOL, SAP, ICF, ANALYTIC CODE
Time Frame
12 months after completion of the study
Access Criteria
Requested from the PI

Locations