Health Literacy Project

NCT ID: NCT06634901

Last Updated: 2025-09-30

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

NOT_YET_RECRUITING

Clinical Phase

NA

Total Enrollment

60 participants

Study Classification

INTERVENTIONAL

Study Start Date

2025-12-01

Study Completion Date

2026-03-31

Brief Summary

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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

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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.

Conditions

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Epilepsy

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

CROSSOVER

Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

NONE

Study Groups

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Health Literacy Educational Session- Control Group Testing

Participants will receive pre- and post-testing at the same interval as the experimental arm. Rather than receiving the educational session intervention, participants will have lunch during the interval. The comparator group will receive the intervention after all primary and secondary outcome measures have been completed.

Group Type ACTIVE_COMPARATOR

Health Literacy Educational Session- Comparator

Intervention Type OTHER

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.

Health Literacy Educational Session

Intervention Type BEHAVIORAL

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.

Health Literacy Educational Session- Experimental Group Testing

Participants are divided into groups of 6-10 adolescents each to receive the educational session intervention, with those aged 12-15 in different groups from those aged 16-18 due to potential differences in question focus.

Group Type EXPERIMENTAL

Health Literacy Educational Session

Intervention Type BEHAVIORAL

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.

Interventions

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Health 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.

Intervention Type OTHER

Health 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.

Intervention Type BEHAVIORAL

Eligibility Criteria

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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.
Minimum Eligible Age

12 Years

Maximum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Mbarara Regional Referral Hospital

UNKNOWN

Sponsor Role collaborator

Butabika National Referral Mental Hospital

UNKNOWN

Sponsor Role collaborator

Duke University

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Deborah Koltai, MD

Role: PRINCIPAL_INVESTIGATOR

Duke University

Locations

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Mayanja Memorial Hospital

Mbarara, , Uganda

Site Status

Mbarara Regional Referral Hospital

Mbarara, , Uganda

Site Status

Countries

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Uganda

Central Contacts

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Deborah Koltai, MD

Role: CONTACT

919-812-0808

Paula Njeru, MsCGH

Role: CONTACT

316-365-3238

References

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Biset G, Abebaw N, Gebeyehu NA, Estifanos N, Birrie E, Tegegne KD. Prevalence, incidence, and trends of epilepsy among children and adolescents in Africa: a systematic review and meta-analysis. BMC Public Health. 2024 Mar 12;24(1):771. doi: 10.1186/s12889-024-18236-z.

Reference Type BACKGROUND
PMID: 38475724 (View on PubMed)

Meyer AC, Dua T, Ma J, Saxena S, Birbeck G. Global disparities in the epilepsy treatment gap: a systematic review. Bull World Health Organ. 2010 Apr;88(4):260-6. doi: 10.2471/BLT.09.064147. Epub 2009 Sep 25.

Reference Type BACKGROUND
PMID: 20431789 (View on PubMed)

Owolabi LF, Owolabi SD, Adamu B, Jibo AM, Alhaji ID. Epilepsy treatment gap in Sub-Saharan Africa: Meta-analysis of community-based studies. Acta Neurol Scand. 2020 Jul;142(1):3-13. doi: 10.1111/ane.13246. Epub 2020 Apr 14.

Reference Type BACKGROUND
PMID: 32219865 (View on PubMed)

Kirabira J, Nakawuki M, Fallen R, Zari Rukundo G. Perceived stigma and associated factors among children and adolescents with epilepsy in south western Uganda: A cross sectional study. Seizure. 2018 Apr;57:50-55. doi: 10.1016/j.seizure.2018.03.008. Epub 2018 Mar 8.

Reference Type BACKGROUND
PMID: 29567525 (View on PubMed)

Sanchez N, Kajumba M, Kalyegira J, Sinha DD, Bobholz S, Gualtieri A, Chakraborty P, Onuoha E, Fuller AT, Teuwen DE, Haglund MM, Koltai DC. Stakeholder views of the practical and cultural barriers to epilepsy care in Uganda. Epilepsy Behav. 2021 Jan;114(Pt B):107314. doi: 10.1016/j.yebeh.2020.107314. Epub 2020 Aug 3.

Reference Type BACKGROUND
PMID: 32758404 (View on PubMed)

Kaddumukasa M, Kaddumukasa MN, Buwembo W, Munabi IG, Blixen C, Lhatoo S, Sewankambo N, Katabira E, Sajatovic M. Epilepsy misconceptions and stigma reduction interventions in sub-Saharan Africa, a systematic review. Epilepsy Behav. 2018 Aug;85:21-27. doi: 10.1016/j.yebeh.2018.04.014. Epub 2018 Jun 13.

Reference Type BACKGROUND
PMID: 29906697 (View on PubMed)

Ngugi AK, Kariuki SM, Bottomley C, Kleinschmidt I, Sander JW, Newton CR. Incidence of epilepsy: a systematic review and meta-analysis. Neurology. 2011 Sep 6;77(10):1005-12. doi: 10.1212/WNL.0b013e31822cfc90.

Reference Type BACKGROUND
PMID: 21893672 (View on PubMed)

Ba-Diop A, Marin B, Druet-Cabanac M, Ngoungou EB, Newton CR, Preux PM. Epidemiology, causes, and treatment of epilepsy in sub-Saharan Africa. Lancet Neurol. 2014 Oct;13(10):1029-44. doi: 10.1016/S1474-4422(14)70114-0.

Reference Type BACKGROUND
PMID: 25231525 (View on PubMed)

Kaddumukasa MN, Kaddumukasa M, Kajumba M, Smith PJ, Bobholz S, Kakooza-Mwesige A, Sinha DD, Almojuela A, Chakraborty P, Nakasujja N, Nakku J, Gualtieri A, Onuoha E, Kolls BJ, Muhumuza C, Smith CE, Sanchez N, Fuller AT, Haglund MM, Koltai DC. Barriers to biomedical care for people with epilepsy in Uganda: A cross-sectional study. Epilepsy Behav. 2021 Jan;114(Pt B):107349. doi: 10.1016/j.yebeh.2020.107349. Epub 2020 Sep 20.

Reference Type BACKGROUND
PMID: 32962922 (View on PubMed)

Beghi E. The Epidemiology of Epilepsy. Neuroepidemiology. 2020;54(2):185-191. doi: 10.1159/000503831. Epub 2019 Dec 18.

Reference Type BACKGROUND
PMID: 31852003 (View on PubMed)

Scott AJ, Sharpe L, Hunt C, Gandy M. Anxiety and depressive disorders in people with epilepsy: A meta-analysis. Epilepsia. 2017 Jun;58(6):973-982. doi: 10.1111/epi.13769. Epub 2017 May 3.

Reference Type BACKGROUND
PMID: 28470748 (View on PubMed)

Adewuya AO, Ola BA. Prevalence of and risk factors for anxiety and depressive disorders in Nigerian adolescents with epilepsy. Epilepsy Behav. 2005 May;6(3):342-7. doi: 10.1016/j.yebeh.2004.12.011.

Reference Type BACKGROUND
PMID: 15820341 (View on PubMed)

Mbuba CK, Newton CR. Packages of care for epilepsy in low- and middle-income countries. PLoS Med. 2009 Oct;6(10):e1000162. doi: 10.1371/journal.pmed.1000162. Epub 2009 Oct 13.

Reference Type BACKGROUND
PMID: 19823570 (View on PubMed)

Nicholas A. Unlocking the hidden burden of epilepsy in Africa: Understanding the challenges and harnessing opportunities for improved care. Health Sci Rep. 2023 Apr 17;6(4):e1220. doi: 10.1002/hsr2.1220. eCollection 2023 Apr.

Reference Type BACKGROUND
PMID: 37081998 (View on PubMed)

Krishnaiah B, Alwar SP, Ranganathan LN. Knowledge, attitude, and practice of people toward epilepsy in a South Indian village. J Neurosci Rural Pract. 2016 Jul-Sep;7(3):374-80. doi: 10.4103/0976-3147.181490.

Reference Type BACKGROUND
PMID: 27365954 (View on PubMed)

Mbuba CK, Abubakar A, Odermatt P, Newton CR, Carter JA. Development and validation of the Kilifi Stigma Scale for Epilepsy in Kenya. Epilepsy Behav. 2012 May;24(1):81-5. doi: 10.1016/j.yebeh.2012.02.019. Epub 2012 Apr 4.

Reference Type BACKGROUND
PMID: 22481043 (View on PubMed)

Voils CI, Maciejewski ML, Hoyle RH, Reeve BB, Gallagher P, Bryson CL, Yancy WS Jr. Initial validation of a self-report measure of the extent of and reasons for medication nonadherence. Med Care. 2012 Dec;50(12):1013-9. doi: 10.1097/MLR.0b013e318269e121.

Reference Type BACKGROUND
PMID: 22922431 (View on PubMed)

Cicero CE, Giuliano L, Todaro V, Colli C, Padilla S, Vilte E, Crespo Gomez EB, Camargo Villarreal WM, Bartoloni A, Zappia M, Nicoletti A. Comic book-based educational program on epilepsy for high-school students: Results from a pilot study in the Gran Chaco region, Bolivia. Epilepsy Behav. 2020 Jun;107:107076. doi: 10.1016/j.yebeh.2020.107076. Epub 2020 Apr 18.

Reference Type BACKGROUND
PMID: 32315969 (View on PubMed)

Other Identifiers

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PRO00116250

Identifier Type: -

Identifier Source: org_study_id

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