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Policy on Optimal Epilepsy Management (POEM)

The recruitment status of this study is unknown. The completion date has passed and the status has not been verified in more than two years.
Verified January 2013 by Northern California Institute of Research and Education.
Recruitment status was:  Recruiting
San Francisco Veterans Affairs Medical Center
Veterans Administration Epilepsy Centers of Excellence
University of California, San Francisco
UCB Pharma
Information provided by (Responsible Party):
Dr. John Hixson, San Francisco Veterans Administration Medical Center Identifier:
First received: December 28, 2012
Last updated: January 4, 2013
Last verified: January 2013
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.

Condition Intervention
Seizure Disorder

Study Type: Interventional
Study Design: Intervention Model: Single Group Assignment
Masking: Open Label
Official Title: Policy on Optimized Epilepsy Management: The Use of an Online Social Media Platform to Collect Patient-Entered Data in the Veteran Population

Resource links provided by NLM:

Further study details as provided by Northern California Institute of Research and Education:

Primary Outcome Measures:
  • Epilepsy Self-Management [ Time Frame: 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 [ Time Frame: 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 Outcome Measures:
  • Epilepsy Self-Management Information Scale [ Time Frame: 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

Estimated Enrollment: 200
Study Start Date: October 2012
Estimated Study Completion Date: December 2013
Estimated Primary Completion Date: October 2013 (Final data collection date for primary outcome measure)
Arms Assigned Interventions
Experimental: PLM
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.
PatientsLikeMe (PLM, 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.
Other Names:
  • PLM


Ages Eligible for Study:   18 Years and older   (Adult, Senior)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes

Inclusion Criteria:

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

Exclusion Criteria:

  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT01762215

United States, California
San Francisco VA Medical Center Recruiting
San Francisco, California, United States, 94121
Contact: Stephanie Van Bebber, MSc    415-221-4810 ext 5914   
Principal Investigator: John D Hixson, MD         
Sponsors and Collaborators
Northern California Institute of Research and Education
San Francisco Veterans Affairs Medical Center
Veterans Administration Epilepsy Centers of Excellence
University of California, San Francisco
UCB Pharma
  More Information

Additional Information:
Responsible Party: Dr. John Hixson, Assistant Professor of Clinical Neurology, San Francisco Veterans Administration Medical Center Identifier: NCT01762215     History of Changes
Other Study ID Numbers: POEM
Study First Received: December 28, 2012
Last Updated: January 4, 2013

Keywords provided by Northern California Institute of Research and Education:

Additional relevant MeSH terms:
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Neurologic Manifestations
Signs and Symptoms processed this record on May 22, 2017