Epilepsy
Conditions
Brief summary
Evaluating changes in knowledge, attitude, and practices (KAP) related to epilepsy and its treatment as a result of an educational intervention among adolescents with epilepsy to determine if improved KAP about epilepsy results in improved medication adherence and less perceived stigma.
Detailed description
This proof-of-concept study aims to evaluate the impact of a targeted health literacy intervention on knowledge and attitudes about epilepsy and its treatment, and reported medication adherence and stigma among adolescents with epilepsy in Uganda. Research Questions: 1. What is the impact of a culturally relevant information session on the knowledge of epilepsy and its treatment among adolescents with epilepsy in Uganda? 2. What is the impact of such an educational session on reported medication adherence and reported stigma among this group? The investigators hypothesize that a culturally relevant educational intervention will significantly improve knowledge about epilepsy and its treatment, increase medication adherence, and reduce stigma among adolescents with epilepsy in Uganda. This hypothesis is based on the premise that tailored health literacy interventions can address specific misconceptions and barriers to care, thereby improving health outcomes for PWE (persons with epilepsy) in contexts burdened by significant treatment gaps and cultural stigmatization.
Interventions
OTHERHealth Literacy Educational Session- Comparator
During the pre-to-post-test interval for the Knowledge, Attitudes, and Practices (KAP) measure, participants in this arm will take a break and have lunch.
BEHAVIORALHealth Literacy Educational Session
The Intervention is a 90 minute small group (n=6-10) session with an expert epilepsy provider reviewing fundamental information about epilepsy being a treatable neurologic condition, with topics including epidemiology, causation facts and myths, treatment and the importance of consistent medication, stigma, barriers to care and well-being. These topics will be covered in the first 45 minutes, leaving the second 45 minutes for Q\&A with the expert. This session provides the basic health information relevant to people with epilepsy, communication of which is often sacrificed in overcrowded clinics found in low resource settings.
Sponsors
Duke University
Mbarara Regional Referral Hospital
Butabika National Referral Mental Hospital
Study design
Allocation
RANDOMIZED
Intervention model
CROSSOVER
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
12 Years to 18 Years
Healthy volunteers
No
Inclusion criteria
* Adolescents with a diagnosis of epilepsy attending a clinic at one of the study sites. * Ages 12-18 years * Ability and willingness to provide informed assent and guardian consent to participate in the study. * English, Runyankole or Luganda language proficiency.
Exclusion criteria
* Unable or unwilling to provide informed consent or assent to participate in the study. * Developmental/cognitive challenges that hinder participation in the intervention or completion of surveys.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Epilepsy Knowledge, Attitudes, and Practices (KAP) | 20 minutes | The primary outcome measure is a 31-item Knowledge, Attitudes, and Practices (KAP) about epilepsy survey. The questionnaire was adapted from Krishnaiah and colleagues (2016), and measures basic knowledge about and attitudes toward epilepsy. Epilepsy Knowledge \& Attitudes (KAP) has a reporting scale: 0-31 (higher better). |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Kilifi Stigma Scale | 10 minutes | This 15-item survey was developed and validated in Kilifi, Kenya to measure stigma, and has been used extensively in epilepsy survey research in East Africa. The reporting scale for the Kilifi Stigma Scale: 0-30 (higher worse) |
| Voils Medication Adherence Items | 3-minutes | Three items from Voils Medication Adherence (2012) measure will be used to estimate reported medication adherence. The reporting scale for Voil's Medication Adherence: 3-15 (higher worse). |
Countries
Uganda
Contacts
CONTACTDeborah Koltai, MD
CONTACTPaula Njeru, MsCGH
PRINCIPAL_INVESTIGATORDeborah Koltai, MD
Duke University
Outcome results
None listed