Policy on Optimal Epilepsy Management

NCT01762215 | Unknown

• 1 other identifier: POEM
• Study Type: interventional
• Target: 200
• Locations: 1 country
• Sites: 1

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.

Conditions

Epilepsy; Seizure Disorder

Keywords

Epilepsy; Seizure; Veteran

Outcome Measures

Primary Outcomes (2)

• Epilepsy Self-Management

  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.

  6 weeks

• Epilepsy Self-Efficacy

  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.

  6 weeks

Secondary Outcomes (1)

• Epilepsy Self-Management Information Scale

  6 weeks

Study Arms (1)

PLM

EXPERIMENTAL

Upon consenting to the study, participants will be asked to register an account on PatientsLikeMe; no personal identifiers will be required. As part of registration patients create a user name and password for the website and share their email with PatientsLikeMe. Participants will be asked to provide a set of demographic variables and to complete a survey assessing elements of self-management, disease knowledge, social support, and quality of life. Paticipants will then use the PatientsLikeMe website for 6 weeks as much as they wish. After 6 weeks the participants are asked to complete a second survey.

Behavioral: PatientsLikeMe.com

Interventions

PatientsLikeMe.com BEHAVIORAL

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.

Also known as: PLM, www.patientslikeme.com

PLM

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• US Veteran
• Epilepsy (Seizure Disorder)
• \>18 years

Sponsors & Collaborators

• Northern California Institute of Research and Education: lead
• San Francisco Veterans Affairs Medical Center: collaborator
• Veterans Administration Epilepsy Centers of Excellence (ECoE): collaborator
• University of California, San Francisco: collaborator
• PatientsLikeMe: collaborator
• UCB Pharma: collaborator

Study Sites (1)

San Francisco VA Medical Center

San Francisco, California, 94121, United States

RECRUITING

MeSH Terms

Conditions

Epilepsy; Seizures

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurologic Manifestations; Signs and Symptoms; Pathological Conditions, Signs and Symptoms

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Professor of Clinical Neurology

Study Record Dates

• First Submitted: December 28, 2012
• First Posted: January 7, 2013
• Study Start: October 1, 2012
• Primary Completion: October 1, 2013
• Study Completion: December 1, 2013
• Last Updated: January 7, 2013

Record last verified: 2013-01

Locations

US (1)