Patient Perspectives

1
Patient Perspectives

• Giving a voice to patients

2
Who and Why?

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

3
The Survey

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

4
The Survey

• 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
Zip Code of Respondents

• 01027,01702,01844,02816,03032,04093,04219,05201,07
  463
• 10466,11201,12302,13040,13090,13114,14850,15229,17
  872, 19026,19040,19152
• 20121,20785,20814,21208,21208,21704,23228,23464,24
  201, 25414,25969,26801,28115,29505,29708
• 32701,32905,34120,34205,34491,35020,37303,37716,37
  932, 39194
• 40509,43017,43081,44090,44321,46182,46342,47971,48
  130
• 53132,54930,55116,55303
• 62946,63105,66046,66047,66208,67211
• 72110,72143,75023,75052,75474,77479,77511,78244,78
  250
• 85302,89423
• 90022,92014,92707,94550,94568,95338,95762,97213,97
  362, 99503,99703

6
Respondents

• An epilepsy patient 56 62.9
• A parent caregiver 30 33.7
• Other family member 3 3.4
• Unrelated caregiver 0 0.0

7
Gender of epilepsy patient

• Female 61 68.5
• Male 28 31.5

8
Current age of epilepsy patient

• 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
Number of years with epilepsy

• 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
Seizure Frequency

• Less than 1 per year 18 20.2
• 1 to 6 per year 19 21.3
• 1 per month 14 15.7
• 1 every other week 7 7.9
• 1 per week 10 11.2
• 1 per day 2 2.2
• More than 1 per day 19 21.3

11
Treatments

• Kepra 29
• Lamictal 24
• Depakote 11
• Dilantin 11
• Vagus Nerve Stimulation 11
• Trideptal 10
• Other 86
• 52 of 89 are on multiple treatments

12
Side effects/problems from treatment

• Tired 31
• Memory problems 15
• None 14
• Dizziness 9
• Mood problems 9
• Seizures continue 8
• Concentration issues 7
• Headaches 7
• Appetite 6
• Shaking 6
• Other 107

13
Effect on quality of life

• Fear 25
• Cant drive 17
• Social issues 13
• Work problems 13
• Depression 12
• Fatigue 11
• School issues 8
• Stressed 7
• Other 50

14
Most difficult part of having epilepsy

• Fear 42
• Social issues 38
• Medical issues 15
• Cant drive 13
• Work problems 7
• Other 6

15
Would you want advanced warning?

• Yes 84 95.5
• No 4 4.5

16
Best length of warning time

• Less than 1 minute 2 2.3
• 1 to 3 minutes 12 13.8
• 3 to 5 minutes 21 24.1
• 5 to 10 minutes 13 14.9
• 10 to 25 minutes 6 6.9
• 25 minutes to 1 hour 10 11.5
• 1 to 6 hours 11 12.6
• 6 to 12 hours 3 3.4
• 12 to 24 hours 2 2.3
• Other 7 8.0

17
Best length of warning time

• 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
Value placed on ability to predict or warn of
seizures

• 1 lowest 4 4.5
• 2 low 1 1.1
• 3 medium 20 22.5
• 4 high 25 28.1
• 5 highest 43 48.3

19
Trigger treatment automatically

• Yes 65 74.7
• No 22 25.3

20
Feelings about having a device implanted in brain

• OK (some qualify if it would work) 37 41.6
• Not sure/want more information 28 31.5
• Does not appeal now 10 11.2
• No 8 9.0
• Ouch 1 1.1
• Patient would have to answer 1 1.1
• No response 4 4.5

21
Reasons if not interested in having device
implanted

• Fear 31
• Not sure want more info 7
• Does not appeal now 3
• Other 5

22
Willing to participate in clinical trials for
implanted devices

• Yes 28 34.1
• No 54 65.9

23
Patient Gender vs. Patient/Caregiver Respondent

• Female Patient Male Patient
• Patient Respondent 44 78.6 12 21.4
• Caregiver Respondent 17 51.5 16 48.5
• Total 51 28

24
Respondent vs. Seizure Frequency

• Patient Caregiver
• Less than 1 per year 15 26.8 3 9.1
• 1 to 6 per year 12 21.4 7 21.2
• 1 per month 8 14.3 6 18.2
• 1 every other week 5 8.9 2 6.1
• 1 per week 7 12.5 3 9.1
• 1 per day 1 1.8 1 3.0
• More than 1 per day 8 14.3 11 33.3
• Total 56 33

25
Gender vs. Seizure Frequency

• Female Male
• Less than 1 per year 14 23.0 4 14.3
• 1 to 6 per year 16 26.2 3 10.7
• 1 per month 8 13.1 6 21.4
• 1 every other week 4 6.6 3 10.7
• 1 per week 6 9.8 4 14.3
• 1 per day 1 1.6 1 3.6
• More than 1 per day 12 19.7 7 25.0
• Total 61 28

26
Best Length of Time Warning vs.Patient/Caregiver

• Patient Parent Other Family
• Less than 1 minute 1.8 3.4 0.0
• 1 to 3 minutes 16.4 10.3 0.0
• 3 to 5 minutes 21.8 31.0 0.0
• 5 to 10 minutes 14.5 13.8 33.3
• 10 to 25 minutes 9.1 3.4 0.0
• 25 minutes to 1 hour 9.1 10.3 66.7
• 1 to 6 hours 18.2 3.4 0.0
• 6 to 12 hours 0.0 10.3 0.0
• 12 to 24 hours 1.8 3.4 0.0
• Other 7.3 10.3 0.0
• Total responses 55 29 3
• Unanswered 2

27
Willingness to Participate in Clinical Trial vs.
Seizure Frequency

• Yes No
• Less than 1 per year 4 15.4 13 24.1
• 1 to 6 per year 5 19.2 13 24.1
• 1 per month 4 15.4 8 14.8
• 1 every other week 4 15.4 2 3.7
• 1 per week 2 7.7 6 11.1
• 1 per day 1 3.8 1 1.9
• More than 1 per day 6 23.1 11 20.4
• Total 26 54
• Unanswered 9

28
Willingness to Participate in Clinical Trial vs.
Patient/Caregiver

• Patient Caregiver
• Yes 17 32.7 11 36.7
• No 35 67.3 19 63.3
• Total 52 30
• Unanswered 7

29
Willingness to Participate in Clinical Trial vs.
Patient Gender

• Female Patient Male Patient
• Yes 15 27.3 11 44.0
• No 40 72.7 14 56.0
• Total 55 25
• Unanswered 9

30
Patient Perspectives

• 2 words stand out and/or surprise
• Fear
• No

31
Thank you

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