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Epilepsy Impact Scale

This study has been completed.
James & Carrie Anderson Fund for Research in Epilepsy
Information provided by (Responsible Party):
Robert S. Fisher, M.D., Ph.D., Stanford University Identifier:
First received: March 29, 2013
Last updated: April 12, 2016
Last verified: April 2016
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 Intervention
Epilepsy Other: Interviews and questionnaires

Study Type: Observational
Study Design: Observational Model: Cohort
Time Perspective: Prospective
Official Title: Questionnaire Development for a Comprehensive Scale to Measure the Impact of Epilepsy on Life.

Resource links provided by NLM:

Further study details as provided by Robert S. Fisher, M.D., Ph.D., Stanford University:

Primary Outcome Measures:
  • 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:
  • 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

Enrollment: 51
Study Start Date: July 2012
Study Completion Date: September 2014
Primary Completion Date: September 2014 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
People with epilepsy
People with epilepsy who have have had at least one seizure in the prior year.
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.

Ages Eligible for Study:   18 Years and older   (Adult, Senior)
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.
  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: NCT01833234

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
Principal Investigator: Robert S Fisher, MD, PhD Stanford University
  More Information

Responsible Party: Robert S. Fisher, M.D., Ph.D., Professor of Neurology, Stanford University Identifier: NCT01833234     History of Changes
Other Study ID Numbers: Stanford Epilepsy IRB 20523
Study First Received: March 29, 2013
Last Updated: April 12, 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:
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases processed this record on September 19, 2017