Attention Ventilator Users!  This form is designed to obtain data that IVUN can use to connect ventilator users more effectively with each other when medical or equipment problems arise or when new users need information and support.

Please assist IVUN by completing the following questionnaire about your ventilator use. If you do not use a ventilator, but know someone who does, please give this census to them. 

NOTE: Please print this form and do not fill out online; it is not working at this moment.


IVUN Census

Diagnosis:

ALS

CCHS

COPD

Muscular dystrophy

Polio

SMA

Spinal cord injury

Other

 

How long have you used a ventilator?

Less than 1 year

1-5 years

6-10 years

11-20 years

More than 20 years

 

How many hours per day do you typically use a ventilator?

Less than 4 hrs/day

4-8 hrs/day

8-16 hrs/day

16-24 hrs/day

24 hrs/day

 

Do you use ONLY nocturnal ventilation?

Yes

No

 

Can you frog breathe?

Yes

No

 

How long can you breathe on your own?

Less than 2 minutes

2-5 minutes

5-10 minutes

10-30 minutes

30-60 minutes

More than 60 minutes

 

What assisted ventilation do you currently use?

Volume ventilator

Pressure support ventilator

Bi-level pressure support

Phrenic nerve pacing

Chest shell (cuirass)

Pneumobelt

Porta-Lung

Iron lung

Other

 

What brand/model of ventilator(s) do you use? (For example, Puritan Bennett LP10, Pulmonetic Systems LTV1000, Respironics BiPAP®, ResMed VPAP®, etc.)

 

 

What interface(s) do you use?

Nasal mask

Nasal pillows

Facial mask

Lipseal

Mouthpiece

Tracheostomy

 

What brand/model of interface(s)? (For example, Puritan Bennett ADAM nasal pillows, Fisher & Paykel Oracle, ResMed Mirage®, Respironics ComfortGel®, Fome-Cuf ® trach tubes, etc.

 

 

If you use a custom-made nasal mask or face mask, please describe it and who made it for you.

 

 

What brand of headgear do you use or have you made your own?

 

 

If you have a tracheostomy, do you use a speaking valve?

Yes

No

 

How do you prevent or lessen respiratory infections? (For example, using manually assisted coughing, the CoughAssist, postural drainage, medicine, etc.)

 

 

Have you used a different form of ventilation in the past? (For example, switched from trach positive pressure to noninvasive or from iron lung to nasal mask) Please describe briefly when and why you changed:

 

 

How many ventilators do you have?

 

 

Your primary ventilator is:

Owned

Leased

 

It is paid for by:

You

Private insurance

Medicare/Medicaid

Government agency (non-US)

 

Your secondary ventilator is:

Owned

Leased

 

It is paid for by:

You

Private insurance

Medicare/Medicaid

Government agency (non-US)

 

 

PERSONAL ASSISTANCE

 

How many hours per day of personal assistance do you use?

None

Less than 2 hours/day

2-4 hours/day

4-8 hours/day

8-16 hours/day

16-24 hours/day

24 hours/day

 

Who provides this assistance?

Personal attendant paid by you

Personal attendant paid by private insurance

Personal attendant paid by Medicare/Medicaid

Personal attendant paid by government (non-US)

Nurse paid by you

Nurse paid by private insurance

Nurse paid by Medicare/Medicaid

Nurse paid by government (non-US)

Family not paid

Family paid by you

Family paid by private insurance

Family paid by Medicare/Medicaid

Family paid by government (non-US)

 

 

PERSONAL DATA

Periodically, manufacturers ask if they can mail promotional flyers about new products to ventilator users. Do you want to receive this information?

Yes

No

 

What is your preference for other ventilator users to contact you:

Mail

Phone

email

 

Name (REQUIRED)

 

Address

 

City

 

State/Province

 

Zip/Postal Code

 

Country

 

Phone (include area/country code)

 

Fax (include area/country code)

 

email (REQUIRED)

 

Birthdate

 

Thank you for your participation.