NJ Epilepsy Task Force Survey Questionnaire

We appreciate your input with the following questionnaire. All responses will be tabulated and compiled to aide
in our final recommendations to the Governor in November.

Please note that all responses are confidential. Your zip code is required for averages, only.

Finally, you must reside in the State of New Jersey to participate in this survey questionnaire.

New Jersey Zip Code for where you reside?

1. My relationship with Epilepsy is:

a. I have Epilepsy

b. I am a caregiver of someone with Epilepsy

c. I am a health care provider who cares for persons with Epilepsy

d. Other

2. Upon learning of the Epilepsy diagnosis, how did you obtain information regarding programs, support groups,
medications and other resources:

a. Neurologist

b. I relied mostly on the internet

c. I relied mostly on recommendations and input from friends and relatives

d. I am not aware to date of programs and resources available to me

e. Not Applicable

3. (Parent) Do you feel that your child’s teacher, day care workers or school personnel are adequately trained in
emergency protocol, warning signs and types of seizures/Epilepsy?

(Adult) Do you feel that your place of employment, adult day care or school are properly trained in the emergency
protocol, warning signs and types of seizures/Epilepsy?

a. Yes, I have not had any problems with personnel being trained

b. No, personnel are aware, but not adequetly trained

c. No, personnel are not aware and I have had to instruct them on protocol and signs

d. Not Applicable

4. Do you feel comfortable going off of medication once you are seizure free and the doctor asks you to taper
medications?

a. Yes, and I will watch closely for breakthrough seizures

b. No, I am a parent and my child should continue the medication into adolescence and until the time that they can
decide on their own

c. No, I am an adult and feel that medications should continue

d. I am not aware to date of programs and resources available to me

e. Not Applicable

5. Generic Medications vs. Brand Name Medications

a. I want the option to remain on my name brand medication to avoid the
possibility of breakthrough seizures

b. I would want the pharmacist to notify me if I am having the substitution and to notify me if they are replacing
the generic with another generic

c. I have no opinion on this topic

d. Not Applicable

6. Driving: By law, your doctor in New Jersey must report you to the DMV if you tell them that you have seizures

a. I don’t mind this at all

b. It is troubling, but I am still honest with my doctor about my health

c. I might not report a break through seizure so that I can get my license back

d. Not Applicable

7. Driving: I would like the law to change so that the doctor does not have to report me and it will be my responsibility
to obey the law

Yes

No

Not Applicable

8. Driving: By law, your doctor in New Jersey must report you to the MVC if you tell them that you have seizures

a. I was unaware my doctor could report me to the MVC

b. I was aware my doctor could report me to the MVC, but I am still honest
with my doctor regarding my seizures

c. It is troubling that my doctor could report me to the MVC , but I am still
honest with my doctor regarding my seizures

d. I might not report a breakthrough seizure to my doctor to avoid losing
my license or so that I may have my license returned

e. Not Applicable

9. What type of doctor takes care of your Epilepsy?

a. Primary care doctor (internist, family doctor, pediatrician)

b. Neurologist

c. Epileptologist (Epilepsy specialist)

d. None

e. Not Applicable

What do you feel is the biggest obstacle(s) which you are facing in regards to Epilepsy?

What solutions/changes would you recommend regarding Epilepsy as a State of New Jersey resident?

Email:

Phone:

Address:

Yes

Mail

Phone

Email

I prefer to be contacted by:

I would like someone to contact me