Table 4.
Participant’s Response to Situational Questions on Seizures Related Disorders
| Situational Questions (SQ) | n | % |
|---|---|---|
| While teaching, Alex fell to the ground, appeared to lose consciousness, and his body shook. This lasted for approximately one minute before he regained consciousness, sat up, and assured the class that he was okay. Did Alex have a seizure? | ||
| Yes | 460 | 71.9 |
| No | 36 | 5.6 |
| I am not sure | 144 | 22.5 |
| If you were asked to report the frequency and duration of seizures in a daily diary for someone you are caring for with a seizure disorder, would you find it beneficial to complete a short training to learn about seizure symptoms before completing the diary? | ||
| Yes | 552 | 86.3 |
| No | 9 | 1.4 |
| If you were asked to report the seizures shortly after they occur, how long is a reasonable amount of time to wait to be required to report the symptoms accurately? | ||
| 1–2 hrs | 14 | 2.2 |
| 10–30 mins | 148 | 23.1 |
| 30 mins to an hour | 52 | 8.1 |
| Within 10 mins | 426 | 66.6 |
| Elaine is the caregiver of her nephew, Joey, who has seizures. Joey is enrolled in a clinical trial and Elaine is required to report his seizure activity in a daily dairy. In the morning, he complained of a runny nose and watery eyes. In the afternoon, Elaine noticed that Joey was limping but Joey told her that he had bumped his knee while skateboarding. In the evening, Joey’s leg was twitching noticeably for approximately one minute and then stopped. | ||
| 0 | 134 | 20.9 |
| 1 | 235 | 36.7 |
| 2 | 52 | 8.1 |
| 3 | 19 | 3.0 |
| 4 | 2 | 0.3 |
| I am not sure | 79 | 12.3 |
| You are the parent or caregiver of a child with seizures who is participating in a clinical trial. As part of the trial, you are asked to report when your child has a seizure and the symptoms that they experience. Recording the precise time of the seizure is important to understanding if the medication is effective; however, seizures can range from relatively non-disruptive (twitching of a limb) to very disruptive (falling to the ground and losing consciousness). | ||
| At the end of the day | 12 | 1.9 |
| I would like an option to do both | 232 | 36.3 |
| Shortly after the seizures happen | 274 | 42.8 |
| Imagine you are taking part in a clinical trial for seizure medication. You are required to report the frequency, duration, and seizure type that you experience in a daily diary. Which method of reporting would be preferred? | ||
| I would prefer to describe seizures in the diary in my own words to help my doctor understand my specific symptoms | 468 | 73.1 |
| I would prefer to use the medical terms such as “atonic” or “tonic-clonic” to report seizures in the diary to make sure I am communicating with my doctor clearly | 99 | 15.5 |
| Imagine that your child has a seizure disorder and is participating in a clinical trial for seizure medication. You are asked to report when your child has a seizure in a daily diary. Which of the following are common signs/symptoms of seizures that you might look for?* | ||
| Falling to the ground | 565 | 13 |
| Staring into space | 390 | 8.9 |
| Loss of consciousness | 1216 | 28 |
| Repetitive movements such as walking in a circle or lip smacking | 1168 | 26.9 |
| Confusion | 434 | 10 |
| Twitching of a limb such as the arm or leg | 470 | 10.8 |
| Fear or Anxiety | 99 | 2.3 |
Notes: %, Percentage of participants. *Participants can provide more than one response; therefore, percentages are presented for the number of total responses.