Loading…

Protocol - Epilepsy Screener - Child/Proxy

Add to Toolkit

Protocol Name from Source:

Ottman Brief Epilepsy Screener - Proxy-reported Version

Availability:

Publicly available

Description:

The Family History of Epilepsy Screening Interview is a nine-item, interviewer-administered questionnaire to screen for the presence of epilepsy in family members, including children and those who are deceased.

Protocol:

Family History of Epilepsy Screening Interviewa

1. Did anyone ever tell you that (he/she) had a seizure or convulsion caused by a high fever when (he/she) was a child?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don’t know

2. (Other than the seizure/s) (he/she) had because of a high fever) Has (he/she) ever had, or has anyone ever told you that (he/she) had, a seizure disorder or epilepsy?b

[ ] Yes

[ ] No

[ ] Possible

[ ] Don’t know

Ask the following questions only if proband said "no" to epilepsy or a seizure disorder in Q2. Otherwise go to next part of interview.

3. (Other than the seizure/s) (he/she) had because of a high fever) Has (he/she) ever had, or has anyone ever told you that (he/she) had, any of the following….b

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

[ ] Yes

[ ] No

[ ] Possible

[ ] Don’t know

B. Uncontrolled movements of part or all of (his/her) body such as twitching, jerking, shaking, or going limp?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don’t know

C. An unexplained change in (his/her) mental state or level of awareness, or an episode of "spacing out" that (he/she) could not control?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don’t know

D. Did anyone ever tell you that when (he/she) was a small child, (he/she) would daydream or stare into space more than other children?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don’t know

E. Has (he/she) 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

F. Shortly after waking up, either in the morning or after a nap, has (he/she) ever noticed uncontrollable jerking or clumsiness, such as dropping things or things suddenly "flying" from (his/her) hands?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don’t know

G. Has (he/she) ever had any other type of repeated unusual spells?

[ ] Yes

[ ] No

[ ] Possible

[ ] Don’t know

a Syntax shown is for living relatives. For deceased relatives, syntax can be modified accordingly, e.g., "Did your (he/she) ever have …." instead of "Has (he/she) ever had…."

b The phrase "Other than the seizure/s [he/she] had because of a high fever" is added only if the 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

None

Requirements

Requirement CategoryRequired
Average time of greater than 15 minutes in an unaffected individual
Major equipment
Specialized requirements for biospecimen collection
Specialized training

Mode of Administration

Self-administered

Life Stage:

Child, Adolescent, Adult, Senior

Specific Instructions:

None

Research Domain Information

Release Date:

November 28, 2017

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.

Keezer et al. (2014) reviewed screening instruments that have been used for epilepsy, but none were specifically designed for screening through a proxy.

Language

English

Standards

StandardNameIDSource

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:

  • Added new protocol
  • Created new data dictionary

Source

Ottman, R., Barker-Cummings, C., Leibson, C. L., Vasoli, V. M., Hauser, W. A., & Buchhalter, J. R. (2001). Accuracy of family history information on epilepsy and other seizure disorders. Neurology, 76(4), 390-396.

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.

Corey, L. A., Kjeldsen, M. J., Solaas, M. H., Nakken, K. O., Friis, M. L., & Pellock, J. M. (2009). The accuracy of self-reported history of seizures in Danish, Norwegian and U.S. twins. Epilepsy Research, 84(1), 1-5.

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

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

Ottman, R., Berenson, K., & Barker-Cummings, C. (2005). Recruitment of families for genetic studies of epilepsy. Epilepsia, 46(2), 290-297.

Ottman, R., & Risch, N. (2012). Genetic epidemiology and gene discovery in epilepsy. In J. L. Noebels, M. Avoli, M. A. Rogawski, R. W. Olsen, & A. V. Delgado-Escueta (Eds.), Jasper’s basic mechanisms of the epilepsies (4th ed.). Bethesda, MD: National Center for Biotechnology Information.

Ottman, R., Barker-Cummings, C., Leibson, C. L., Vasoli, V. M., Hauser, W. A., & Buchhalter, J. R. (2011). Accuracy of family history information on epilepsy and other seizure disorders. Neurology, 76, 390-396.

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 Adolescent Psychiatry, 46(11), 1389-1402.

Protocol ID:

130402

Variables:

Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping