Epilepsy, Seizure Disorder
Conditions
Keywords
Epilepsy, Seizure, Veteran
Brief summary
This study examines the use of an online social media platform (PatientsLikeMe) to assist Veterans with epilepsy. The hypothesis is that the online social media platform, PatientsLikeMe, will improve selected patient-reported outcomes on perceived self-management skills for patients who engage in the website functions.
Interventions
BEHAVIORALPatientsLikeMe.com
PatientsLikeMe (PLM, www.patientslikeme.com) is an established medical social networking website that encourages patients with chronic medical conditions to voluntarily share their story and seek support from a common community. Additionally, PatientsLikeMe is actively exploring opportunities to allow patients to report and track important medical data points with the hope that this will improve their longitudinal care. PatientsLikeMe has developed custom functionality for the epilepsy population including seizure tracking, peer support, and printable doctor visit support sheets.
Sponsors
San Francisco Veterans Affairs Medical Center
Veterans Administration Epilepsy Centers of Excellence (ECoE)
University of California, San Francisco
PatientsLikeMe
UCB Pharma
Northern California Institute of Research and Education
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* US Veteran * Epilepsy (Seizure Disorder) * \>18 years
Exclusion criteria
\-
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Epilepsy Self-Management | 6 weeks | The Epilepsy Self-Management Scale (ESMS) is a 38 item scale that assesses frequency of use of epilepsy self-management practices. A 5-point Likert scale asks participants to respond from never to always. The scale includes 5 subscales that measure medication management, Information management, Safety management, Seizure management, and Lifestyle Management. Higher scores indicate more frequent use of self-management strategies. The scale and its subscale have been previously validated and used in similar studies. |
| Epilepsy Self-Efficacy | 6 weeks | The Epilepsy Self-Efficacy Scale is a 33-item scale that measures aspects of efficacy in the self-management of epilepsy. An 11-point Likert rating scale asks participants to choose from 0, I cannot do at all to 10, sure I can do. The scale contains three dimensions: 1) self-efficacy for medication management, 2) self-efficacy for seizure management and 3) self-efficacy for general management issues. Higher scores correspond to higher levels of self-efficacy. The scale has been validated and used in similar studies of website interventions for epilepsy patients. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Epilepsy Self-Management Information Scale | 6 weeks | This is a subscale of the Epilepsy Self-Management Scale, which measures the frequency with which patients use strategies to manage information about their epilepsy |
Countries
United States
Outcome results
None listed