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Epilepsy Foundation » Programs » survey

You and Your Health Care

Instructions

The Epilepsy Foundation is committed to doing all it can to encourage effective communications between people with epilepsy (or their parents in the case of children with epilepsy) and their health care providers.

As part of that effort, the Foundation is inviting web visitors to respond to a series of questions about experiences with doctor/patient communications. This questionnaire is confidential and participant identities will NOT be shared with any other person.

Please provide the following

Zip Code

Age of person with seizures

Questions

Please answer the following questions:

1.	This best describes my/my child's care:

	I am currently receiving medical care for epilepsy/seizure disorders.
	I am currently receiving medical care for non-epileptic seizures (sometimes called pseudoseizures).
	I am currently receiving medical care for epileptic and non-epileptic seizures.
	I am the parent of a child currently receiving medical care for epilepsy/seizure disorders.
	I am the parent of a child currently receiving medical care for non-epileptic seizures.
	I am the parent of a child or adult with epileptic and non-epileptic seizures.

2.	The epilepsy treatment consists of:

	One medication
	Two medications
	Three medications
	Medication plus VNS
	Medication plus ketogenic diet
	Medication following surgery

3.	The following best describes my/my child's seizure control currently:

	No seizures at all
	Occasional seizures (every six months or so)
	Seizures every three months
	Monthly seizures
	Weekly seizures
	Daily seizures

4.	The following best describes my/my child's experience of side effects from current treatment:

	No side effects at all
	Some minor side effects
	Some major side effects
	A lot of serious side effects

5.	How satisfied are you with the level of control you are receiving from your current AED medication?

	Very satisfied
	Somewhat satisfied
	Not satisfied

6.	How satisfied are you with the level of side effects from your current AED medication?

	Very satisfied
	Somewhat satisfied
	Not satisfied

7.	Has your/your child's doctor ever changed medications due to troubling side effects?

	Yes
	No (Skip to Q. 9)

8.	Did the new medication(s) make a positive difference?

	Yes
	No

9.	How involved are you in your medication treatment decisions?

	Very involved
	Somewhat involved
	Not involved at all

10.	Do you ever feel reluctant to tell your doctor about uncontrolled seizures?

	Yes
	No

11.	Do you feel reluctant to tell your doctor about side effects?

	Yes
	No

12.	Are you familiar with the phrase "No Seizures, No Side Effects?"

	Yes
	No

13.	Do you think "No Seizures, No Side Effects" is an achievable goal for you or your child?

	Yes (Skip to Q. 15)
	No

14.	If "No Seizures, No Side Effects" is not an achievable goal for you or your child, how would you want your treatment to be weighted?

	More seizures, fewer side effects
	Fewer seizures, more side effects

15.	Would you want your doctor to:

	Include me in setting treatment goals.
	Just go ahead and do what he or she thinks will work best for me.

16.	I/my child receive(s) epilepsy care from:

	Primary care physician (Internist, family practioner, pediatrician, OB/GYN)
	Primary care physician at HMO
	Primary care physician in private practice
	Neurologist with HMO
	Neurologist in private practice
	Epilepsy Center neurologist

17.	How do you pay for care?

	Private insurance
	Group insurance through my work
	Group insurance through spouse's work
	Medicare
	Medicaid
	Self pay

18.	How often do you or your child see the person who provides your epilepsy care?

	Once a year
	Twice a year
	Three times a year
	More than three times a year

19.	How long do you usually spend with the doctor during each visit?

	Less than 15 minutes
	15 to 30 minutes
	More than 30 minutes

20.	My doctor usually discusses the following with me:

	( Select all that apply.)
	How many seizures since last visit
	Any side effects from the medicine
	How my life is going
	New drugs or other treatment options
	Other medical issues (high blood pressure, smoking, obesity, etc.)
	Depression
	Other neurological issues (migraine, back pain, etc.)

21.	What is the most important discussion you would like to have with the doctor, the one you would like to see most time devoted to:

	Side effects
	Emotional issues
	Seizure frequency
	Better control
	New drugs or other treatment options
	How my (my child's) life is going

22.	Do you usually have an opportunity to talk about the issues identified above with the doctor?

	Yes
	No

23.	Do you feel that you have sufficient time to talk about the above issue(s)?

	Yes
	No

24.	Do you usually have an opportunity to ask questions about your (or your child's) treatment?

	Yes
	No (Skip to Q. 27)

25.	Do you take advantage of opportunities to ask questions on a regular basis?

	Always (Skip to Q. 27)
	Sometimes
	Not usually

26.	If you do not take advantage of opportunities to ask questions on a regular basis, why not?

	No time
	Don't like to look as if I don't understand
	Forget to ask
	Feel as though "doctor doesn't want me to"

27.	Do you prefer talking about your (your child's) care with your doctor or other member of your health care team?

	Prefer talking with my doctor
	Prefer talking with other members of the health care team

28.	If you talk with other members of the health care team during office visits and by phone calls, which of the following is most important to you?

	The chance to talk with other members of the health care team
	The health care team members work closely with my doctor
	The health care team spends more time with me and answer my questions more thoroughly
	The health care team member alerts my doctor when I need to speak directly with him or her

29.	Do you communicate with your doctor between visits through e-mail?

	Yes
	No

30.	Do you communicate with your doctor between visits over the phone?

	Yes
	No

31.	On a scale of 1 to 10, with 1 being not helpful at all and 10 being most helpful, please rate your discussions with your doctor (in person or by other means).

	1
	2
	3
	4
	5
	6
	7
	8
	9
	10

32.	What in your opinion is the biggest barrier to better communications with the doctor?

	No barriers, we have good communications
	Not enough time
	Hard to follow the terms that are used
	Doctor is not very interested in what I say
	No explanations of why certain things are done

33.	What could your doctor do to improve communications with you?

	Nothing, we have good communications
	Give me more time to ask questions
	Not speak so fast, use simpler words
	Listen more
	Give me more information, explain more

34.	What could you do to improve communication with your doctor?

	Don't know
	Maybe write things down
	Speak up more
	Be more relaxed in the office
	Do research on my own

35.	Does your doctor give you pamphlets to explain more about epilepsy and its treatment?

	Yes
	No (Skip to Q. 37)

36.	Are they helpful to you?

	Yes
	No

37.	Did your doctor mention the Epilepsy Foundation to you as another source of information?

	Yes
	No

38.	Have you contacted your local Epilepsy Foundation for assistance?

	Yes
	No

39.	I would like more information on:

	( Select all that apply.)
	New medicines
	Why I can't skip doses
	Side effects
	Vagus nerve stimulation
	Ketogenic diet
	Surgery
	Other treatments (herbs, supplements, minerals, etc)
	Ways to live more safely
	Lifestyle issues
	Pregnancy
	Menopause
	Childhood epilepsy
	Epilepsy syndromes
	Mood disorders
	First aid
	Legal issues
	Partial seizures

40.	What can the Epilepsy Foundation do to improve doctor/patient communications? (25 words or less)

41.	Please provide any feedback you wish about the survey. Thank you for your participation.