Title: Supporting everyday self-management practices for pediatric patients with epilepsy

Jonathan Bidwell

Computer Science PhD Student

School of Interactive Computing

College of Computing

Georgia Institute of Technology

Date: Tuesday, May 1st, 2018

Time: 10 am-12 pm (EST)

Location: Centergy One, Rm 670, Yellow Jacket Room

Committee

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Dr. Elizabeth E Mynatt (Advisor), School of Interactive Computing, Georgia Institute of Technology

Dr. Rosa Arriaga, School of Interactive Computing, Georgia Institute of Technology

Dr. Lauren Wilcox, School of Interactive Computing, Georgia Institute of Technology

Dr. Cam Escoffery, Department of Behavioral Sciences and Health Education Rollins School of Public Health, Emory University

Dr. Sookyong Koh MD, Department of Neurology, Children’s Healthcare of Atlanta

Abstract

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Many patients with epilepsy and their caregivers struggle with daily self-management practices such as reporting seizure events, sleep, stress, activity and other health-related behaviors to clinicians. Mobile and wearable applications and devices have the potential to help patients to overcome notable social and logistical barriers to completing these practices. However few studies have investigated the role that these resources could play within pediatric epilepsy self-management.

In this thesis, I investigate mobile and health tracking applications for improving data collection quality among adolescent patients with epilepsy and patient caregivers. My research contributes to addressing three research needs: 1) Establishing clinical information needs during epilepsy treatment; 2) improving data collection quality, and 3) evaluating patient self-efficacy and activation. 

I begin by presenting clinical patient self-reporting needs following several formative studies with clinicians. I then present an evaluation of a commercial seizure detection wristband and propose a novel approach for reducing high false alarm rates using video reviews of past seizure events. Finally, I evaluate the feasibility of implementing mobile Ecological Momentary Assessment (EMA), health tracking devices, and motivational strategies for facilitating consistent, prompt and reliable data collection among patients and caregivers. I conclude by sharing design guidance for developing family-based epilepsy self-management tools.