Dear User of Non-Invasive Ventilation,

First, I want to thank Post-Polio Health International (PHI) and International Ventilator Users Network’s (IVUN) Executive Director, Joan Headley, for informing you of this project.

I am working on a pilot project about the “Well-Being of Users of Non-Invasive Ventilation.” If you use non-invasive ventilation (NIV), I would appreciate if you would take the time to complete brief validated questionnaires by Sunday, July 5, 2009. Non-invasive ventilation (NIV) includes using a mouthpiece or a nasal or full-face mask with a Bi-Pap or volume ventilator.


To complete the questionnaires, please copy and paste the link below into your internet’s search browser, or click on the link:

Completing the questionnaires usually take about 10 minutes. Most often, your first response to a question is the most accurate. Once you open the questionnaires, you need to answer all of the questions at one time. The system will not allow you to answer some questions, save them, and then go back later and answer the rest.

Purpose of Pilot Project

The purpose of collecting data from these questionnaires is to identify personal issues that may be impacting the lives of users of NIV. I have been asked to contribute to writing a textbook chapter about users of NIV and would like to see if there are any needs that I can address that would provide insights to the health professionals who treat us. I am collaborating with two pulmonologists who are experts in the field.

As a vent user myself for over 25 years and a behavioral health professional, vent users and family members have shared personal difficulties with me through the years. To add to the anecdotal evidence and my perceptions, I decided to gather data in a more systematic way.

This is an independent pilot project that is not affiliated with an institution. Instead, a team of Post-Baccalaureate Pre-Medicine students with research experience have volunteered their assistance to complete this project. Depending on our findings, this pilot project may provide the basis of a grant proposal to further research this subject.


Your online responses are completely confidential and anonymous. The internet will automatically forward your responses to a survey firm that will compile the data and only inform us of total response and not any identifying information.

Submitting Responses

Please respond directly on-line, if you are able. You also can print the questionnaires and fax them directly to me at 708-354-3670 by Sunday, July 5, 2009. Faxed responses will be confidential and your forms will be shredded after we tally your responses.

My Background

I am interested in vent user issues given my personal and professional background:

I hope that this information convinces you to participate in this pilot project. Of course, your participation is totally voluntary. If you have any difficulties accessing the questionnaires or questions about this project, please forward them to me at

Thank you for considering this request.

Best regards,
Linda Bieniek
Member, Post-Polio Health International
and International Ventilator Users Network

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