Giving a voice to patients Patients and caregivers Impact on more than patient Caregivers often decide for, or influence the decisions of, patients 19 questions Open 6 weeks, ending May 15, 2009 News article on Epilepsy Foundation of America website with link to IWSP4 website 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 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, 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 An epilepsy patient5662.9% A parent caregiver3033.7% Other family member 33.4% Unrelated caregiver00.0% Female6168.5% Male2831.5% 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 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 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% Kepra29 Lamictal24 Depakote11 Dilantin11 Vagus Nerve Stimulation11 Trideptal10 Other of 89 are on multiple treatments Tired31 Memory problems15 None14 Dizziness9 Mood problems9 Seizures continue8 Concentration issues7 Headaches7 Appetite6 Shaking6 Other107 Fear25 Cant drive17 Social issues13 Work problems13 Depression12 Fatigue11 School issues8 Stressed7 Other50 Fear42 Social issues38 Medical issues15 Cant drive13 Work problems7 Other6 Yes8495.5% No44.5% 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% 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 1 lowest44.5% 2 low11.1% 3 medium2022.5% 4 high2528.1% 5 highest4348.3% Yes6574.7% No2225.3% 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% Fear31 Not sure want more info7 Does not appeal now3 Other5 Yes2834.1% No5465.9% Female PatientMale Patient Patient Respondent % % Caregiver Respondent % % Total5128 PatientCaregiver Less than 1 per year %3 9.1% 1 to 6 per year %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% % Total5633 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 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 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 PatientCaregiver Yes % % No % Total Unanswered 7 Female PatientMale Patient Yes % % No % % Total5525 Unanswered 9 2 words stand out and/or surprise Fear No Dr. Ivan Osorio Dr. Steven Schacter Paul and Linda Sloan Norman and Norma Leary