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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 Dr. John Hixson, San Francisco Veterans Administration Medical Center.
Recruitment status was:  Recruiting
Sponsor:
ClinicalTrials.gov Identifier:
NCT01762215
First Posted: January 7, 2013
Last Update Posted: January 7, 2013
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.
Collaborators:
San Francisco Veterans Affairs Medical Center
Veterans Administration Epilepsy Centers of Excellence
University of California, San Francisco
PatientsLikeMe
UCB Pharma
Information provided by (Responsible Party):
Dr. John Hixson, San Francisco Veterans Administration Medical Center
December 28, 2012
January 7, 2013
January 7, 2013
October 2012
October 2013   (Final data collection date for primary outcome measure)
  • 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.
Same as current
No Changes Posted
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
Same as current
Not Provided
Not Provided
 
Policy on Optimal Epilepsy Management
Policy on Optimized Epilepsy Management: The Use of an Online Social Media Platform to Collect Patient-Entered Data in the Veteran Population
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.
Not Provided
Interventional
Not Provided
Intervention Model: Single Group Assignment
Masking: None (Open Label)
  • Epilepsy
  • Seizure Disorder
Behavioral: PatientsLikeMe.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.
Other Names:
  • PLM
  • www.patientslikeme.com
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.
Intervention: Behavioral: PatientsLikeMe.com
Not Provided

*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
 
Unknown status
200
December 2013
October 2013   (Final data collection date for primary outcome measure)

Inclusion Criteria:

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

Exclusion Criteria:

Sexes Eligible for Study: All
18 Years and older   (Adult, Senior)
Yes
Contact information is only displayed when the study is recruiting subjects
United States
 
 
NCT01762215
POEM
No
Not Provided
Not Provided
Dr. John Hixson, San Francisco Veterans Administration Medical Center
Northern California Institute of Research and Education
  • San Francisco Veterans Affairs Medical Center
  • Veterans Administration Epilepsy Centers of Excellence
  • University of California, San Francisco
  • PatientsLikeMe
  • UCB Pharma
Not Provided
Northern California Institute of Research and Education
January 2013

ICMJE     Data element required by the International Committee of Medical Journal Editors and the World Health Organization ICTRP