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Protocol - Epilepsy Screener - Child/Proxy

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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.

Specific Instructions:

None

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.

Protocol Name from Source:

Ottman Brief Epilepsy Screener - Proxy-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

None

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. Questions in protocol could be modified for self-administered questionnaire, but additional validation would be required.

Life Stage:

Child, Adolescent, Adult, Senior

Participants:

Adults, ages 18 and older who have a family member suspected of having epilepsy.

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
Common Data Elements (CDE) Neurology Proxy Reported Epilepsy Assessment Description Text 6459281 CDE Browser
Derived Variables

None

Process and Review

The 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 Name Variable IDVariable DescriptiondbGaP Mapping
PX130402_Epilepsy_Screener_Child_Proxy_Other_Type_Repeated_Unusual_Spells
PX130402030700 (Other than the seizure/s) (he/she) had more
because of a high fever) Has (he/she) ever had, or has anyone ever told you that (he/she) had, any of the followingÔøΩ. Has (he/she) ever had any other type of repeated unusual spells? show less
N/A
PX130402_Epilepsy_Screener_Child_Proxy_Seizure_Convulsion_Fit_Spell_Circumstances
PX130402030100 (Other than the seizure/s) (he/she) had more
because of a high fever) Has (he/she) ever had, or has anyone ever told you that (he/she) had, any of the followingÔøΩ. A seizure, convulsion, fit, or spell under any circumstances? show less
N/A
PX130402_Epilepsy_Screener_Child_Proxy_Seizure_Convulsion_High_Fever
PX130402010000 Did anyone ever tell you that (he/she) had a more
seizure or convulsion caused by a high fever when (he/she) was a child? show less
N/A
PX130402_Epilepsy_Screener_Child_Proxy_Seizure_Disorder_Epilepsy
PX130402020000 (Other than the seizure/s) (he/she) had more
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? show less
N/A
PX130402_Epilepsy_Screener_Child_Proxy_Shortly_After_Waking_Up
PX130402030600 (Other than the seizure/s) (he/she) had more
because of a high fever) Has (he/she) ever had, or has anyone ever told you that (he/she) had, any of the followingÔøΩ. 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 ÔøΩflyingÔøΩ from (his/her) hands? show less
N/A
PX130402_Epilepsy_Screener_Child_Proxy_Small_Child_Daydream_Stare
PX130402030400 (Other than the seizure/s) (he/she) had more
because of a high fever) Has (he/she) ever had, or has anyone ever told you that (he/she) had, any of the followingÔøΩ. 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? show less
N/A
PX130402_Epilepsy_Screener_Child_Proxy_Uncontrolled_Movements
PX130402030200 (Other than the seizure/s) (he/she) had more
because of a high fever) Has (he/she) ever had, or has anyone ever told you that (he/she) had, any of the followingÔøΩ. Uncontrolled movements of part or all of (his/her) body such as twitching, jerking, shaking, or going limp? show less
N/A
PX130402_Epilepsy_Screener_Child_Proxy_Unexplained_Change
PX130402030300 (Other than the seizure/s) (he/she) had more
because of a high fever) Has (he/she) ever had, or has anyone ever told you that (he/she) had, any of the followingÔøΩ. An unexplained change in (his/her) mental state or level of awareness, or an episode of 'spacing outÔøΩ that (he/she) could not control? show less
N/A
PX130402_Epilepsy_Screener_Child_Proxy_Unusual_Body_Movements_Strobe_Lights_Video_Games_Flickering_Sun
PX130402030500 (Other than the seizure/s) (he/she) had more
because of a high fever) Has (he/she) ever had, or has anyone ever told you that (he/she) had, any of the followingÔøΩ. Has (he/she) ever noticed any unusual body movements or feelings when exposed to strobe lights, video games, flickering lights, or sun glare? show less
N/A
Neurology
Measure Name:

Epilepsy Screener

Release Date:

November 28, 2017

Definition

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

Purpose

This measure is used to screen people 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, psychosis, attention-deficit/hyperactivity disorder, and autism (Plioplys et al., 2007; Levinsohn, 2007).

Keywords

Neurology, seizure