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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
Recruitment status was: Recruiting
Sponsor:
Northern California Institute of Research and Education
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
ClinicalTrials.gov Identifier:
NCT01762215
First received: December 28, 2012
Last updated: January 4, 2013
Last verified: January 2013
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Purpose
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 |
|---|---|
| Epilepsy Seizure Disorder | Behavioral: PatientsLikeMe.com |
| 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:
Genetics Home Reference related topics:
pyridoxal 5'-phosphate-dependent epilepsy
U.S. FDA Resources
Further study details as provided by Dr. John Hixson, San Francisco Veterans Administration Medical Center:
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.
|
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:
|
Eligibility| Ages Eligible for Study: | 18 Years and older (Adult, Senior) |
| Sexes Eligible for Study: | All |
| Accepts Healthy Volunteers: | Yes |
Criteria
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 ClinicalTrials.gov identifier: NCT01762215
Please refer to this study by its ClinicalTrials.gov identifier: NCT01762215
Locations
| 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 poemstudy@ncire.org | |
| 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
PatientsLikeMe
UCB Pharma
More Information
Additional Information:
| Responsible Party: | Dr. John Hixson, Assistant Professor of Clinical Neurology, San Francisco Veterans Administration Medical Center |
| ClinicalTrials.gov Identifier: | NCT01762215 History of Changes |
| Other Study ID Numbers: |
POEM |
| Study First Received: | December 28, 2012 |
| Last Updated: | January 4, 2013 |
Keywords provided by Dr. John Hixson, San Francisco Veterans Administration Medical Center:
|
Epilepsy Seizure Veteran |
Additional relevant MeSH terms:
|
Seizures Epilepsy Brain Diseases Central Nervous System Diseases |
Nervous System Diseases Neurologic Manifestations Signs and Symptoms |
ClinicalTrials.gov processed this record on June 28, 2017