Appendix I. Survey Instrument: International Practices and Costs of Care for Neurological

Appendix I. Survey Instrument: International Practices and Costs of Care for Neurological Diseases: Survey of Practitioners

Dear Sir or Madam:

This letter is written to request your participation in the study, entitled International Practices and Costs of Care for Neurological Diseases: Survey of Practitioners.

This is an international survey meant to assess the availability, affordability, and accessibility to neurological tests and procedures in countries worldwide. Funding for our study is done in part by Grand Challenges Canada.

You will be presented with 4 scenarios and diagnostic tests typically used for the workup for various neurological diseases.

Please note that this survey is NOT meant to test knowledge or adherence standards, but rather access and cost at a global level. We are particularly interested in out-of-pocket costs for patients. We understand that many answers are estimates, so please make an approximation even if you don’t know the exact number or percentage. If you have access to exact costs that is most helpful.

This survey should take no more than 15 minutes. Please contact us if you would like further information at the phone number 617-726-7643 (out of country usually must dial 001 first) or email

Thank you in advance for your consideration.

Survey Questions:

In what country do you practice?

Please provide your Specialty:

NeurologistPsychiatrist Primary Care Physician Other Medical Specialty (please specify)

Email (optional):

Hospital or Clinic Name (optional):

Which best describes your hospital/clinic affiliation (please choose all that apply):

Academic Institution/University
Government run/subsidized hospital or clinic
Private hospital or clinic
Other (please describe):

Please describe the setting of your hospital or clinic (please check all that apply):

In a rural area
In a small urban area (10,000-100,000 inhabitants)
In a city ( > 100,000 inhabitants)
Please explain your practice environment further if not described by above choices:

Please describe the socioeconomic class of your patients if possible:

My patients are mostly of lower than average wealth
My patients are mostly of average wealth
My patients are mostly of higher than average wealth
My patients are of various levels of income/wealth
Please describe your patient population further if desired:

Is your initial visit free of charge to the patient?

Yes
No
In some cases:
I don’t know

Would you rather answer cost questions in your local currency or in US dollars?

US dollars ($ US)
Local currency (please specify currency):

I. Epilepsy: An 8 year-old girl comes in with new onset seizures. She has had two seizures, witnessed by her family, who describe a focal-onset seizure pattern. One occurred a week ago, and the second occurred yesterday.

Would you be able to get an EEG for this patient? YES NO I don’t know, I do not see epilepsy cases
If no
For what reason(s) is EEG not available?Check all that apply:

It isn’t available in my country

It is available in few cities/hospitals in my country, but not where I work

We have an EEG machine but it isn’t functioning properly

We have EEGequipment but no skilled workers/technicians to utilize it

We have equipment but no one trained to read the EEG results

Other (please describe):

We have an EEG machine but it isn’t functioning properly. Please elaborate:

For how long has it not functioned?

Do you know what is wrong with it? If yes,what?

If yes
What is the costto the patient of an EEG in the public system? (Please specify out-of-pocket costs):

Cost to patient in public system:

I don’t know

Comments:

What percentage of your patients in the public systemare able to pay for an EEG when indicated?

0% – it is too expensive

Less than 25%

25%-50%

50%-75%

More than 75%

100% (it is free in the public system)

What is the cost of an EEG to the public system? (i.e. what does the hospital of government pay?

Hospital/government cost:

I don’t know

Comments:

Typical wait time for an EEG in the public system:

Less than 1 week

1-4 weeks

1-6 months

More than 6 months

What is the cost to the patient of an EEG in the private system? (Please specify out-of-pocket costs?

Cost to the patient in the private system:

I don’t know

Comments

What percentage of your patients in the private system are able to pay for an EEG when indicated?

0% - it is too expensive

Less than 25%

25%-50%

50%-75%

More than 75%

Typical wait time for an EEG in the private system

Less than 1 week

1-4 weeks

1-6 months

More than 6 months

II. Stroke: A 70 year-old man comes in with a history of transient ischemic attacks and now has right-sided hemiparesis and aphasia x 2 hours.

Would you be able to get ahead CTscanfor this patient? YES NO I don’t know, I do not see stroke cases
If no
For what reason(s) is head CT scan not available? Checkall that apply:

It isn’t available in my country

It is available in few cities/hospitals in my country, but not where I work

We haveCT equipment but it isn’t functioning properly

We have CT equipment but no skilled workers/technicians to utilize it

We have equipment but no one trained to read the CT results

Other (please describe):

We have a CT scanner but it isn’t functioning properly. Please elaborate:

For how long how it not functioned?

Do you know what is wrong with it? If yes, what?

If yes
What is the costto the patient of a head CT scan in the public system? (Please specify out-of-pocket costs):

Cost to patient in public system:

I don’t know

Comments:

What percentage of your patients in the public system are able to pay for a head CT scan when indicated?

0% - it is too expensive

Less than 25%

25%-50%

50%-75%

More than 75%

100% (it is free in the public system)

What is the cost of a head CT scan to the public system (i.e. what does the hospital or government pay)?

Hospital/government cost:

I don’t know.

Comments:

Typical wait time for a head CT scan needed emergently in the public system

Less than 4.5 hours

4.5-24 hours

More than 24 hours

What is the cost to the patient of a head CT scan in the private system? (Please specify out-of-pocket costs)

Cost to the patient in the private system:

I don’t know

Comments:

What percentage of your patients in the private system are able to pay for a head CT scan when indicated?

0% - it is too expensive

Less than 25%

25%-50%

50%-75%

More than 75%

Typical wait time for head CTscan needed emergently in the private system?

Less than 24 hrs

1-2 days

48 hrs–7 days

III. Stroke: A 70 year-old man comes in with a history of transient ischemic attacks and now right-sided hemiparesis and aphasia x 2 hours (Note: this is the same case as above):

Would you be able to get a brain MRI (magnetic resonance imaging) for this patient if indicated? YES NO I don’t know, I don’t see stroke cases
If no,
For what reasons(s) is it not available? Checkall that apply:

It isn’t available in my country

It is available in few cities/hospitals in my country, but not where I work

We have one but it isn’t functioning properly

We have MRI equipment but no skilled workers/technicians to utilize it

We have equipment but no one trained to interpret the MRI results

Other (please describe):

We have MRI equipment but it isn’t functioning properly. Please elaborate.

For how long has it not functioned?

Do you know what is wrong with it? If yes, what?

If yes
What is the costto the patient of a brain MRI in the public system? (Please specify out-of-pocket costs)

Cost to patient in public system:

I don’t know

Comments:

What percentage of patients in the public system are able to pay for a brain MRI when indicated?

0% - it is too expensive

Less than 25%

25%-50%

50%-75%

More than 75%

100% (it is free in the public system)

What is the cost of a brain MRI to the public system? (i.e. what does the hospital or government pay)?

Hospital/government cost:

I don’t know

Comments

Typical wait time for a brain MRI in the public system?

Less than 48 hours

48 hours-1 week

1-4 weeks

4 weeks-6 months

More than 6 months

What is the cost to the patient of a brain MRI in the private system? (Please specify out-of-pocket costs):

Cost to the patient in the private system:

I don’t know

Comments:

What percentage of patients in the private systems are able to pay for a brain MRI when indicated?

0% - it is too expensive

Less than 25%

25%-50%

50%-75%

More than 75%

Typical wait time for a brain MRI in the private system:

Less than 48 hours

48 hours-1 week

1-4 weeks

4 weeks-6 months

More than 6 months

IV. Guillain-Barré Syndrome: A 20-year-old patient comes in with one-week history of ascending weakness and bilateral facial droop. You suspect a variant of Guillain-Barré Syndrome.

Would you be able to get an EMG for this patient? YES NO I don’t know, I do not see Guillain-Barré Syndrome cases
If no
For what reason(s) is EMG not available? (check all that apply)

It isn’t available in my country

It is available in few cities/hospitals in my country, but not where I work

We haveEMG equipment but it isn’t functioning properly

We have EMG equipment but no skilled workers/technicians to utilize it

We have equipment but no one trained to interpret the EMG results

Other (please describe):

We have EMG equipment but it isn’t functioning properly. Please elaborate:

For how long has it not functioned?

Do you know what is wrong with it? If yes, what?

If yes
What is the costto the patient of an EMG in the public system?

Cost to patient in public system:

I don’t know

Comments:

What percentage of patients in the public system are able to pay for an EMG when indicated?

0% – it is too expensive

Less than 25%

25%-50%

50%-75%

More than 75%

100% (it is free in the public system)

What is the cost of an EMG to the public system? (i.e. what does the hospital of government pay?)

Hospital/government cost:

I don’t know

Comments

Typical wait time for EMGfor a patient like this in the public system:

Less than 1 week

1-4 weeks

1-6 months

More than 6 months

What is the cost to the patient of an EMG in the private system?

Cost to the patient in the private system:

I don’t know

Comments:

What percentage of patients in the private system are able to pay for an EMG when indicated?

0% - it is too expensive

Less than 25%

25%-50%

50%-75%

More than 75%

V. Meningitis:A 30-year old woman comes in with a headache, stiff neck, fevers, and nausea/vomiting. You suspect meningitis.

When cost is NOT a barrier, are you able to get both a lumbar puncture and CSF (cerebrospinal fluid) analysis for a patient with suspected meningitis? YES NO I don’t know, I don’t see meningitis cases
If no
For what reason(s) is lumbar puncture not available? Check all that apply:

We do not have the equipment necessary to perform a lumbar puncture

We don’t have anyone to perform lumbar puncture in my hospital/clinic/region

We have someone trained to perform lumbar puncture but have barriers to getting the CSF analyzed

Other (please specify):

Comments:

If yes
What is the cost to the patient to get a lumbar puncture and basic CSF analysis (glucose, protein, white cells) in the public system?

Cost to patient in public system:

I don’t know

Other/Comments:

What percentage of patients in the public system are able to pat for a lumbar puncture when indicated?

0% - it is too expensive

Less than 25%

25%-50%

50%-75%

More than 75%

100% (it is free in the public system)

What is the cost of a lumbar puncture and basic CSF analysis (glucose, protein, white cells) to the public system? (i.e. what does the hospital or government pay?)

Hospital/government cost:

I don’t know

Comments:

What is the cost to the patient to get a lumbar puncture and basic CSF analysis (glucose, protein, white cells) in the private system?

Cost to patient private system:

I don’t know

Other/Comments:

What percentage of patients in the private in the private system are able to pay for a lumbar puncture when indicated?

0% - it is too expensive

Less than 25%

25%-50%

50%-75%

More than 75%

Which tests can you obtain when sending a lumbar puncture, assuming cost is not a limiting factor? Please check all that apply:

White cell count

Glucose

Total protein

Opening pressure (WITH manometer)

Bacterial cultures of CSF

Myobacterical cultures

HSV (herpes simplex virus)

Oligoclonal bands

When the patient can afford to pay for a lumbar puncture, what percentage consent to the procedure?

No patients consent to lumbar puncture

Less than 25%

25%-50%

50%-75%

More than 75%

VI. General Needs and Diagnostic Tests: If you had to list 3 diagnostic tests that you would like to have available in your practice that are not currently available, what would they be? These could include serum tests, genetic tests, or technological tests, and may include the tests listed in this survey or any others. Please list the one you would most like to see as #1. For instance, a person may write (1) EEG (2) Neuormyelitis Opticaantibody (3) genetic tests for muscular dystrophy.

#1 ______
Reason not available in your practice setting: ______
#2 ______
Reason not available in your practice setting: ______
#3______
Reason not available in your practice setting: ______

Comments on above answers: ______