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Protocol - Epilepsy Screener - Adult

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Protocol Name from Source:

Ottman Brief Epilepsy Screener - Self-reported Version

Availability:

Publicly available

Description:

The following protocol is a nine-item, interviewer-administered questionnaire to screen for the presence of epilepsy.

Protocol:

1. Did anyone ever tell you that you had a seizure or convulsion caused by a high fever when you were a child?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don't know

2. [Other than the seizure[s] you had because of a high fever] Have you ever had, or has anyone ever told you that you had, a seizure disorder or epilepsy?*

[ ] Yes

[ ] No

[ ] Possible

[ ] Don't know

If the respondent answers "Yes" to question 2, the protocol is complete.

Ask the following questions only if the subject said "NO" to epilepsy or a seizure disorder in question 2.

3. [Other than the seizure[s] you had because of a high fever] Have you ever had, or has anyone ever told you that you had, any of the following...*

3a. A seizure, convulsion, fit or spell under any circumstances?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don't know

3b. Uncontrolled movements of part or all of your body such as twitching, jerking, shaking or going limp?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don't know

3c. An unexplained change in your mental state or level of awareness; or an episode of "spacing out" that you could not control?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don't know

3d. Did anyone ever tell you that when you were a small child, you would daydream or stare into space more than other children?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don't know

3e. Have you ever noticed any unusual body movements or feelings when exposed to strobe lights, video games, flickering lights, or sun glare?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don't know

3f. Shortly after waking up, either in the morning or after a nap, have you ever noticed uncontrollable jerking or clumsiness, such as dropping things or things suddenly "flying" from your hands?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don't know

3g. Have you ever had any other type of repeated unusual spells?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don't know

*Phrase "Other than the seizure[s] you had because of a high fever" added only if subject responded "yes" or "possible" to question 1.

Personnel and Training Required

The interviewer must be trained to conduct personal interviews with individuals from the general population. The interviewer must be trained and found to be competent (i.e., tested by an expert) at the completion of personal interviews. The interviewer should be trained to prompt respondents further if a "don’t know" response is provided.

Equipment Needs

Either a pencil-and-paper or computer-assisted instrument may be used. If a computer-assisted instrument is used, computer software may be necessary to develop the instrument. The interviewer will require a laptop computer/handheld computer to administer a computer-assisted questionnaire.

Requirements

Requirement CategoryRequired
Average time of greater than 15 minutes in an unaffected individualNo
Major equipmentNo
Specialized requirements for biospecimen collectionNo
Specialized trainingNo

Mode of Administration

Interviewer (face-to-face)

Life Stage:

Adult, Senior

Specific Instructions:

None

Research Domain Information

Release Date:

May 12, 2010

Definition

A questionnaire to assess epilepsy, a condition characterized by recurrent seizures and which is a component of over 40 neurological disorders (Aminoff et al., 2005).

Purpose

This measure is used to screen for a lifetime history of epilepsy. Epilepsy can be caused by genetics or environmental factors such as traumatic brain injury or central nervous system infection (Abramovici & Bagic, 2016). People with epilepsy are more likely to also suffer from migraines, depression, anxiety, attention-deficit/hyperactivity disorder, and autism (Plioplys et al., 2007; Levinsohn, 2007).

Selection Rationale

This screener was vetted against similar protocols and selected because it is a validated, brief instrument that is low burden for investigators and respondents (see Keezer et al. [2014a] for review).

Keezer et al. (2014b) used an instrument modified from this protocol by adding a screening question about use of antiepileptic medications. They also added questions about seizure occurrence within the last 5 years and current use of antiepileptic medications so as to distinguish between a lifetime history of epilepsy and active epilepsy. The modified instrument may be used as an alternative to the protocol recommended here.

Language

English

Standards

StandardNameIDSource
Common Data Elements (CDE)Person Epilepsy Assessment Description Text3076113CDE Browser
Logical Observation Identifiers Names and Codes (LOINC)Epilepsy screener proto62763-8LOINC

Process and Review

[link[phenx.org/node/103|Expert Review Panel 4]] (ERP 4) reviewed the measures in the Neurology, Psychiatric, and Psychosocial domains.

Guidance from ERP 4 included the following:

· Revised description of measure

Source

Ottman, R., Barker-Cummings, C., Leibson, C. L., Vasoli, V. M., Hauser, W. A., & Buchhalter, J. R. (2010). Validation of a brief screening instrument for the ascertainment of epilepsy. Epilepsia, 51(2), 191-197.

General References

Abramovici, S., & Bagic, A. (2016). Epidemiology of epilepsy. Handbook of Clinical Neurology, 138, 159-171.

Aminoff, M. J., Greenberg, D. A., & Simon, R. P. (2005). Clinical neurology (6th ed.). New York: Lange/McGraw-Hill Medical.

Keezer, M., Bouman, H. K., & Wolfson, C. (2014a). The diagnostic accuracy of screening questionnaires for the identification of adults with epilepsy: A systematic review. Epilepsia, 55(11), 1772-1780.

Keezer, M., Pelletier, A., Stechysin, B., Veilleux, M., Jette, N., & Wolfson, C. (2014b). The diagnostic test accuracy of a screening questionnaire and algorithm in the identification of adults with epilepsy. Epilepsia, 55(11), 1763-1771.

Levinsohn, P. M. (2007). The autism-epilepsy connection. Epilepsia, 48(Suppl. 9), 33-35.

Plioplys, S., Dunn, D. W., & Caplan, R. (2007). 10-year research update review: Psychiatric problems in children with epilepsy. Journal of the American Academy of Child and Adolescent Psychiatry, 46(11), 1389-1402.

Protocol ID:

130401

Variables:

Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX130401_Seizure_Or_ConvulsionPX130401010000Did anyone ever tell you that you had a seizure or convulsion caused by a high fever when you were a child?4N/A
PX130401_Have_Seizure_Disorder_Or_EpilepsyPX130401020000[Other than the seizure[s] you had because of a high fever] Have you ever had, or has anyone ever told you that you had, a seizure disorder or epilepsy?4N/A
PX130401_Other_SeizurePX130401030100[Other than the seizure[s] you had because of a high fever] Have you ever had, or has anyone ever told you that you had, any of the following... A seizure, convulsion, fit or spell under any circumstances?4N/A
PX130401_Uncontrolled_MovementsPX130401030200[Other than the seizure[s] you had because of a high fever] Have you ever had, or has anyone ever told you that you had, any of the following... Uncontrolled movements of part or all of your body such as twitching, jerking, shaking or going limp?4N/A
PX130401_Unexplained_Change_In_MentalPX130401030300[Other than the seizure[s] you had because of a high fever] Have you ever had, or has anyone ever told you that you had, any of the following... An unexplained change in your mental state or level of awareness; or an episode of "spacing out" that you could not control?4N/A
PX130401_Daydream_Or_Stare_Into_SpacePX130401030400[Other than the seizure[s] you had because of a high fever] Have you ever had, or has anyone ever told you that you had, any of the following... Did anyone ever tell you that when you were a small child, you would daydream or stare into space more than other children?4N/A
PX130401_Strobe_Lights_ResponsePX130401030500[Other than the seizure[s] you had because of a high fever] Have you ever had, or has anyone ever told you that you had, any of the following... Have you ever noticed any unusual body movements or feelings when exposed to strobe lights, video games, flickering lights, or sun glare?4N/A
PX130401_Uncontrollable_Jerking_Or_ClumsinessPX130401030600[Other than the seizure[s] you had because of a high fever] Have you ever had, or has anyone ever told you that you had, any of the following... Shortly after waking up, either in the morning or after a nap, have you ever noticed uncontrollable jerking or clumsiness, such as dropping things or things suddenly "flying" from your hands?4N/A
PX130401_Other_Repeated_Unusual_SpellsPX130401030700[Other than the seizure[s] you had because of a high fever] Have you ever had, or has anyone ever told you that you had, any of the following... Have you ever had any other type of repeated unusual spells?4N/A