I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: okarol on December 11, 2007, 09:15:14 PM
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From the National Kidney Foundation
NOTICE:
The NKF is inviting you to participate in a study of how chronic kidney disease affects your life. If you have already completed this survey, thank you for your participation. If you have not had an opportunity, you have until December 31, 2007 to reply.
This project is part of a Small Business Innovative Research (SBIR) grant from the National Institutes of Health to develop good ways to assess health status for people with kidney disease. We want to learn how kidney disease affects health and well-being from the patients
point of view. We also want to know the best way to ask patients the
questions that will help us understand this.
This study involves completing a survey on the internet. The survey will take approximately 30 minutes to complete. The questions will be about your health and well-being. The NKF is working with QualityMetric Incorporated and Tufts-New England Medical Center to develop a short computerized questionnaire for kidney disease patients.
Your answers to these questions will help us decide which survey questions are best for understanding the health status of people with kidney disease.
To take the survey, go to www.kidney.org, and click on the Chronic Kidney Disease Survey button. You will be taken to the QualityMetric Website to answer the questions.
Thank you for your help! Should you have any questions, please
contact Monica Gannon at (212) 889-2210, EXT. 136.
Sincerely,
Monica Gannon
Early Intervention Programs Director
The National Kidney Foundation
Monicag@kidney.org
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"But aside from that, Mrs. Lincoln, how did you like the play?"
I don't see what information this could add beyond what is already all too well known from the daily clinical experience of thousands of doctors and nurses, nor do I see what could ever be done differently on the basis of whatever might be discovered? Are they going to decide to cure renal failure if the survey shows that the patients are desperate?
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I took the survey last time it was posted in case it might actually make a difference in some way. However on completion, I really began to wonder what good became of it. Don't they already know the answers? And if not, where have they been?
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These are good comments - write to ask Monicag@kidney.org how spending 30 minutes of your time will make a difference. It would be interesting to hear her answer.