1. Giving a voice to patients

2.  Patients and caregivers  Impact on more than patient  Caregivers often decide for, or influence the decisions of, patients

3.  19 questions  Open 6 weeks, ending May 15, 2009  News article on Epilepsy Foundation of America website with link to IWSP4 website

4.  IWSP4 website contained link to survey online  IWSP4 website contained pdf version to print, fill out and mail  5 surveys received via mail, entered manually  84 surveys completed online

5.  01027,01702,01844,02816,03032,04093,04219,05201,07463  10466,11201,12302,13040,13090,13114,14850,15229,17872, 19026,19040,19152  20121,20785,20814,21208,21208,21704,23228,23464,24201, 25414,25969,26801,28115,29505,29708  32701,32905,34120,34205,34491,35020,37303,37716,37932, 39194  40509,43017,43081,44090,44321,46182,46342,47971,48130  53132,54930,55116,55303  62946,63105,66046,66047,66208,67211  72110,72143,75023,75052,75474,77479,77511,78244,78250  85302,89423  90022,92014,92707,94550,94568,95338,95762,97213,97362, 99503,99703

6.  An epilepsy patient5662.9%  A parent caregiver3033.7%  Other family member 33.4%  Unrelated caregiver00.0%

7.  Female6168.5%  Male2831.5%

8.  2, 3, 4, 4, 4, 4, 6, 6, 7, 7, 7, 8, 9, 9  11, 12, 12, 13, 13, 15, 15, 16, 16, 16, 17, 17, 17, 18, 18  20, 22, 23, 24, 24, 26, 27, 27, 27, 29, 29  30, 30, 30, 31, 32, 32, 33, 33, 34, 35, 37, 39  40, 40, 42, 42, 42, 44, 44, 44, 44, 45, 46, 46, 46, 47, 48, 49, 49  50, 50, 51, 51, 53, 53, 54, 54, 54, 55, 57, 58, 58, 58  61, 64, 67  70  87

9.  0,0,0,0,0,1,1,1,1,1,2,2,2,2,2,3,3,3,3,4,4,4,4,4,4,4,5,5,5,5,6,7,7,9  10,10,11,11,12,12,13,13,13,13,15,15,16,16,18,19,19,19  20,21,23,25,25,25,25,26,28,28,28  30,30,30,31,32,32,32,33,33,33,33,35,36,39  41,43,44,45,46,48,49  51,51,52  72

10.  Less than 1 per year1820.2%  1 to 6 per year1921.3%  1 per month1415.7%  1 every other week77.9%  1 per week1011.2%  1 per day22.2%  More than 1 per day1921.3%

11.  Kepra29  Lamictal24  Depakote11  Dilantin11  Vagus Nerve Stimulation11  Trideptal10  Other 86 52 of 89 are on multiple treatments

12.  Tired31  Memory problems15  None14  Dizziness9  Mood problems9  Seizures continue8  Concentration issues7  Headaches7  Appetite6  Shaking6  Other107

13.  Fear25  Can’t drive17  Social issues13  Work problems13  Depression12  Fatigue11  School issues8  Stressed7  Other50

14.  Fear42  Social issues38  Medical issues15  Can’t drive13  Work problems7  Other6

15.  Yes8495.5%  No44.5%

16.  Less than 1 minute22.3%  1 to 3 minutes1213.8%  3 to 5 minutes2124.1%  5 to 10 minutes1314.9%  10 to 25 minutes66.9%  25 minutes to 1 hour1011.5%  1 to 6 hours1112.6%  6 to 12 hours33.4%  12 to 24 hours22.3%  Other78.0%

17.  Reasoning behind the length of warning time selection: ◦ Time to get to safe place ◦ Time to get help ◦ Time to remove themselves from dangerous or embarrassing situations ◦ Longer would be stressful

18.  1 lowest44.5%  2 low11.1%  3 medium2022.5%  4 high2528.1%  5 highest4348.3%

19.  Yes6574.7%  No2225.3%

20.  OK (some qualify if it would work)3741.6%  Not sure/want more information2831.5%  Does not appeal now1011.2%  No89.0%  Ouch11.1%  Patient would have to answer11.1%  No response44.5%

21.  Fear31  Not sure – want more info7  Does not appeal now3  Other5

22.  Yes2834.1%  No5465.9%

23. Female PatientMale Patient  Patient Respondent44 78.6%12 21.4%  Caregiver Respondent17 51.5%16 48.5% Total5128

24. PatientCaregiver  Less than 1 per year15 26.8%3 9.1%  1 to 6 per year12 21.4%7 21.2%  1 per month8 14.3%6 18.2%  1 every other week5 8.9%2 6.1%  1 per week7 12.5%3 9.1%  1 per day1 1.8%1 3.0%  More than 1 per day8 14.3%11 33.3% Total5633

25. FemaleMale  Less than 1 per year1423.0%414.3%  1 to 6 per year1626.2%310.7%  1 per month813.1%621.4%  1 every other week46.6%310.7%  1 per week69.8%414.3%  1 per day11.6%13.6%  More than 1 per day1219.7%725.0% Total6128

26. PatientParentOther Family  Less than 1 minute1.8 %3.4 %0.0 %  1 to 3 minutes16.4 % 10.3 % 0.0 %  3 to 5 minutes21.8 % 31.0 % 0.0 %  5 to 10 minutes14.5 % 13.8 % 33.3 %  10 to 25 minutes9.1 % 3.4 % 0.0 %  25 minutes to 1 hour9.1 % 10.3 %66.7 %  1 to 6 hours18.2 % 3.4 %0.0 %  6 to 12 hours0.0 % 10.3 %0.0 %  12 to 24 hours1.8 % 3.4 %0.0 %  Other7.3 % 10.3 %0.0 % Total responses55293 Unanswered 2

27. YesNo  Less than 1 per year415.4%1324.1%  1 to 6 per year519.2%1324.1%  1 per month415.4% 814.8%  1 every other week415.4% 23.7%  1 per week27.7% 611.1%  1 per day13.8%11.9%  More than 1 per day623.1%1120.4% Total2654 Unanswered 9

28. PatientCaregiver  Yes17 32.7%11 36.7%  No35 67.3%19 63.3 Total 52 30 Unanswered 7

29. Female PatientMale Patient  Yes15 27.3%11 44.0%  No40 72.7%14 56.0% Total5525 Unanswered 9

30.  2 words stand out and/or surprise ◦ Fear ◦ No

31.  Dr. Ivan Osorio  Dr. Steven Schacter  Paul and Linda Sloan  Norman and Norma Leary