In Patient and Family Resources

ARDS Research Survey

Members of the ARDS Community, let your voices be heard, through what you have experienced. Dr. Gordon Rubenfeld, and others researchers, who are getting ready to begin a study that involves ARDS survivors, want input from you! It is your opportunity to be heard and to have what you experienced help others who may endure ARDS in the future.

Though this study is going to focus on the study of the recovery of ARDS survivors, family members who lost a loved one to ARDS may also fill out the survey and express their comments regarding the experiences of themselves and their loved ones hospitalization.

All information is anonymous. You can either submit this form online, or you can print this form and either fax or mail it in. Although all of the information submitted will go directly to the researchers, if you have any questions regarding this survey, email us at info@ardsusa.org

Thank you,

Eileen R. Zacharias
President, ARDS Foundation

Gordon D. Rubenfeld, MD MSc
Associate Professor
Division of Pulmonary and Critical Care Medicine
Box 359762
Harborview Medical Center
325 9th Ave
Seattle WA 98104-2499
FAX: 206.731.8584

August 25, 2003

Dear ARDS survivor or family member of an ARDS survivor:

We need your help! As you know, the problems for thousands of people each year who survive ARDS do not end when they are discharged from the hospital. Weakness, depression, anxiety, skin breakdown, and breathlessness are only a few of the challenges you may have faced and overcome. We are in the planning phase of the first study to see if medical interventions can improve quality of life after ARDS. But, we need your help.

Our research group and others have shown that health related quality of life is reduced after ARDS, but we need more details on the specific problems you encountered and surmounted. We want to use this information so we don’t miss anything when treating our study patients. Since our study intervention will start after patients leave the hospital, focus your comments on things that happened during the first 6 months after you left the hospital.

Please fill out the attached form. It is completely anonymous. We don’t need to know the names of any specific doctors or physical therapists or nurses, but the more details you can give us the better equipped we will be to help others. Read all of the questions through once before you answer them since there might be some overlap in the way we have asked the questions.

This is your chance to reach out to others who will be going through what you have already gone through. You can mail or fax this back to me at the address above.

Thank you very much for your help and time,

Gordon Rubenfeld

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