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Epilepsy Impact Scale

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. Identifier: NCT01833234
Recruitment Status : Completed
First Posted : April 16, 2013
Last Update Posted : April 13, 2016
James & Carrie Anderson Fund for Research in Epilepsy
Information provided by (Responsible Party):
Robert S. Fisher, M.D., Ph.D., Stanford University

Brief Summary:
The investigators are developing a questionnaire that can quickly measure the impact that epilepsy has on a person's life. This questionnaire will be useful in following whether the impact of epilepsy increases, decreases or stays the same over time. The results also may point out areas that would benefit from discussion or attention in visits with your doctor.

Condition or disease Intervention/treatment
Epilepsy Other: Interviews and questionnaires

Detailed Description:
The investigators have used a set of broad open-ended questions about the impact of epilepsy on a person's life to formulate a long list of questions to characterize the impact the seizures, medications, and comorbidities that you are having. In the future, this will be boiled down to a short list of questions.

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Study Type : Observational
Actual Enrollment : 51 participants
Observational Model: Cohort
Time Perspective: Prospective
Official Title: Questionnaire Development for a Comprehensive Scale to Measure the Impact of Epilepsy on Life.
Study Start Date : July 2012
Actual Primary Completion Date : September 2014
Actual Study Completion Date : September 2014

Resource links provided by the National Library of Medicine

MedlinePlus related topics: Epilepsy

Group/Cohort Intervention/treatment
People with epilepsy
People with epilepsy who have have had at least one seizure in the prior year.
Other: Interviews and questionnaires

Primary Outcome Measures :
  1. Validation of a concise question set [ Time Frame: Up to 1 year for question set validation, data presentation within up to 1.5 years ]

Secondary Outcome Measures :
  1. Correlation of subscales [ Time Frame: Up to 1.5 years ]
    Correlation of subscales of the study questionnaire with previously validated scales, including QoLiE-39, NHS Seizure Severity Scale, Liverpool side effects scale, Beck Depression Index

Information from the National Library of Medicine

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, Learn About Clinical Studies.

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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Patients in the Stanford Epilepsy Center who have had a seizure in the past year and agree to participate.

Inclusion Criteria:

  1. Age 18 or more.
  2. Patient has had at least 1 seizure in the past 365 days.
  3. Patient can speak and understand English.

Exclusion Criteria:

  1. Patients suspected of having one of the imitators of epilepsy, for example, syncope, sleep disorder, psychogenic nonepileptic seizures, will be excluded, even if they also have epileptic seizures.
  2. Patients unwilling to spend the time doing the questionnaire.

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT01833234

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United States, California
Stanford University School of Medicine
Stanford, California, United States, 94305-5235
Sponsors and Collaborators
Stanford University
James & Carrie Anderson Fund for Research in Epilepsy
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Principal Investigator: Robert S Fisher, MD, PhD Stanford University
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Responsible Party: Robert S. Fisher, M.D., Ph.D., Professor of Neurology, Stanford University Identifier: NCT01833234    
Other Study ID Numbers: Stanford Epilepsy IRB 20523
First Posted: April 16, 2013    Key Record Dates
Last Update Posted: April 13, 2016
Last Verified: April 2016
Keywords provided by Robert S. Fisher, M.D., Ph.D., Stanford University:
quality of life
seizure severity
antiepileptic drug side effects
patient reported outcomes
Additional relevant MeSH terms:
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Brain Diseases
Central Nervous System Diseases
Nervous System Diseases