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Protocol - Epilepsy Screener - Adult

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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.

Protocol Name from Source:

Ottman Brief Epilepsy Screener - Self-reported Version

Availability:

Publicly available

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
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Interviewer-administered questionnaire

Life Stage:

Adult, Senior

Participants:

Adult, aged 18 or older

Specific Instructions:

None

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 Text 3076113 CDE Browser
Logical Observation Identifiers Names and Codes (LOINC) Epilepsy screener proto 62763-8 LOINC
Process and Review

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_Daydream_Or_Stare_Into_Space PX130401030400 [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? 4 N/A
PX130401_Have_Seizure_Disorder_Or_Epilepsy PX130401020000 [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? 4 N/A
PX130401_Other_Repeated_Unusual_Spells PX130401030700 [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? 4 N/A
PX130401_Other_Seizure PX130401030100 [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? 4 N/A
PX130401_Seizure_Or_Convulsion PX130401010000 Did anyone ever tell you that you had a seizure or convulsion caused by a high fever when you were a child? 4 N/A
PX130401_Strobe_Lights_Response PX130401030500 [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? 4 N/A
PX130401_Uncontrollable_Jerking_Or_Clumsiness PX130401030600 [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? 4 N/A
PX130401_Uncontrolled_Movements PX130401030200 [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? 4 N/A
PX130401_Unexplained_Change_In_Mental PX130401030300 [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? 4 N/A
Research Domain Information
Measure Name:

Epilepsy Screener

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).

Keywords

Neurology, seizure