Study: How chronic kidney disease affects your life

[okarol]

National Kidney Foundation Announcement

Thanks so much to those of you who have participated in the
 study we are conducting of how chronic kidney disease
 affects your life.  For those of you still interested in
 participating, it is not too late!  The deadline has been
 extended to October 1, 2007. 

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, XT136, or
 monicag@kidney.org.

[stauffenberg]

If you ever wonder why all the work you do to encourage contributions to kidney disease research never leads to a cure, a large part of it is because of the money collected being spent on studies like this!  You might as well conduct a survey to find out how people feel when you hit them on the head with a hammer!

If you go to a medical library and look through the latest issues of a dozen different nephrology journals, you will find hundreds of scientific articles fretting and fussing over the relationship between potassium levels and fingernail growth in dialysis patients on PD vs. hemodialysis, but next to no studies on any topic which could possibly lead to a cure.  Research money contributed to kidney disease is mainly used to entertain science nerds who like to play in their laboratories and get a good salary at the same time, but not to cure disease or make the condition of the patients any better.

[okarol]

If you ever wonder why all the work you do to encourage contributions to kidney disease research never leads to a cure, a large part of it is because of the money collected being spent on studies like this!  You might as well conduct a survey to find out how people feel when you hit them on the head with a hammer!

If you go to a medical library and look through the latest issues of a dozen different nephrology journals, you will find hundreds of scientific articles fretting and fussing over the relationship between potassium levels and fingernail growth in dialysis patients on PD vs. hemodialysis, but next to no studies on any topic which could possibly lead to a cure.  Research money contributed to kidney disease is mainly used to entertain science nerds who like to play in their laboratories and get a good salary at the same time, but not to cure disease or make the condition of the patients any better.

Hey S,
I would love for you to call the contact person listed and give them your opinion. Making contact with the people who hire firms to do these kinds of studies definitely makes an impact.

[MattyBoy100]

Karol,

I looked at this survey online and it is exactly the same one as the study I was selected to take part in here in the UK.  Apparently 6000 kidney patients from countries around the world have been selected to take part and to be monitored.  I already completed this survey at my unit.  I have to say some of the questions were very searching such as how much I earned before my diagnosis and how much I earn now as well as the bit where you have to mark the points on your lower body where you get pain.  I marked my feet and knees.

I thought whoever designed this survey seems to know what they are talking about.  And as far as I am concerned if anyone wants to conduct a survey and learn from it and improve treatments for dialysis patients then I am all for it.  After all, if people hadn't studied kidney failure in the first place, there wouldn't be dialysis and many of us wouldn't be here now.  Maybe Stauffenberg wants to think about that.

[paddbear0000]

I just did the survey and am ready for a nap! My eyes kept glazing over, reading the same questions, just worded slightly different, over and over again. I hope it's useful!

[fluffy]

this one of the most irritating surveys i've ever taken, nothing says condescending asshole more than asking the same question over and over to see how i vary my answers. how is it supposed to help?

[jbeany]

I agree - very repetitive, and they don't ask the right questions.  I don't have trouble falling asleep - I have trouble waking up.  Being slightly anemic makes me sleep too much, not wake up early.  And no, I don't worry about whether or not a prospective employer would discriminate against me because of ESRD - I don't have the energy for a full-time job anyhow, so I'm not worried about applying for one, of course. 

[Ken Shelmerdine]

I just did the survey and am ready for a nap! My eyes kept glazing over, reading the same questions, just worded slightly different, over and over again. I hope it's useful!

I agree, I kept thinking there was something wrong with the questionaire with all those repeat questions and yes it does come over as very patronising

[paddbear0000]

I do remember reading something at the beginning of it that said they were asking the questions in different ways in order to gauge how the  questions should be asked to patients. The key words seemed to be the underlined ones. How they determine which form of the question is best based on our answers is beyond me though. It was still painful to take!

[Stacy Without An E]

I just took the survey and everyone is correct, there were too many questions that were slightly altered from the previous question.  Yes, we're tired, can't sleep, aren't as social and can't travel.  Isn't all of that pretty much assumed for a majority of people with ESRD?

I think I'd rather see a comprehensive study asking patients how they can better help with the financial obligations.  Some of us have had to file bankruptcy and ruin their credit to keep their health care continuing.  It's a shame, but all too true.

[kitkatz]

I took the survey. What BS!  What is the difference between kidney disease and my health, aren't they intertwined kinda closely??

[MattyBoy100]

Here we go again with a mass of negative comments with something which may or may not help us all but at least someone out there is trying.

We are all in a difficult situation with our illness so why can't people just try and be postive for a change?

There really is too much negativity on this site.

[kitkatz]

I do not think there is negativity here.  I think dialysis patients see a different view of the world most times.  A lot of the BS the rest of the world will put up with, I will not put up with.  I think I am more apt to call it as it is. 

[paris]

I think this site is anything but negative.  I am for any article, good or bad, that puts the thought of donation or the truth about dialysis in peoples heads.  Even if it is a repetitive survey.  Better than not caring at all.  And with my memory now, they probably should ask me the same question 5 different ways

[Zach]

I agree with MattyBoy100.

I just completed the survey.  No big deal.  And in the survey's introduction, it is explained that, "Some of the questions will seem to be
the same but are asked in slightly different ways.  In order for us to know which version of a question is best, it is important that you try to answer all of the questions."

So, lets all lighten up a bit.
 

[paddbear0000]

I agree with MattyBoy100.

I just completed the survey.  No big deal.  And in the survey's introduction, it is explained that, "Some of the questions will seem to be
the same but are asked in slightly different ways.  In order for us to know which version of a question is best, it is important that you try to answer all of the questions."

So, lets all lighten up a bit.
 

Didn't I just say the same thing a few posts back?

[livecam]

Just finished it, a gazillion questions..hope it helps someone.

[Zach]

Research money contributed to kidney disease is mainly used to entertain science nerds who like to play in their laboratories and get a good salary at the same time, but not to cure disease or make the condition of the patients any better.

You couldn't be more wrong.

http://www.nature.com/ki/journal/v63/n6/abs/4493674a.html

http://www.newswise.com/articles/view/526398/

http://www.homedialysisplus.com/patients.html

http://en.wikipedia.org/wiki/Cinacalcet
http://content.nejm.org/cgi/content/abstract/350/15/1516

 

[stauffenberg]

Zach, go to a medical library, or use the online resource of the National Institute of Health at Entrez Pubmed, and just browse through a large sample of research articles in nephrology.  You will find that only a very tiny percentage of it has even the remotest connection with finding a cure for renal disease or with anything that would make a significant difference in patients' lives.  Another way to convince yourself of the nerdish dithering that goes on with medical research money is to go to a medical library with a friend and have your friend photocopy twenty nephrology articles at random from journals published in 1987 and twenty articles from journals pulished in 2007 and see if you can tell the difference without looking at the publication dates of the sources cited in the footnotes.  You will find that research nephrologists are still uselessly fussing over the same questions with little or no progress being evident.  Finally, just look at the big picture: renal failure first became treatable with dialysis in 1942, but the problem was, as Willem Kolff recognized at the time, that the procedure required to keep the patient alive effectively ruined the patient's quality of life.  That is still basically the case today, of course, though there have been minor improvements. 

But just contrast the degree of progress in nephrology with the degree of progress over exactly the same time period with another science, such as computers or rocket science.  The U.S. Army was just working on its massive, room-filling computer to calculate artillery ranges when Kolff invented his dialysis machine, while the Germans were just test-firing the prototypic V-2 rockets at Peenemunde.  But today, while we are still stuck with dialysis in nephrology, computer technology has changed radically since 1942, just as rocketry has taken us to the Moon and back (almost 30 years ago!), and could take us to Mars and back now.  Measured by other sciences, nephrology is just not keeping pace.

[jbeany]

Research money contributed to kidney disease is mainly used to entertain science nerds who like to play in their laboratories and get a good salary at the same time, but not to cure disease or make the condition of the patients any better.

But just contrast the degree of progress in nephrology with the degree of progress over exactly the same time period with another science, such as computers or rocket science. The U.S. Army was just working on its massive, room-filling computer to calculate artillery ranges when Kolff invented his dialysis machine, while the Germans were just test-firing the prototypic V-2 rockets at Peenemunde. But today, while we are still stuck with dialysis in nephrology, computer technology has changed radically since 1942, just as rocketry has taken us to the Moon and back (almost 30 years ago!), and could take us to Mars and back now. Measured by other sciences, nephrology is just not keeping pace.

Hmmm - seems to me that computer science changed mostly because of a couple of "science nerds who like to play in their laboratories" - well, garage, actually.  And aren't you kind of discounting the progress made in transplants?  And they are working on cures for some of the causes of ESRD - but there are multiple reasons we ended up here, and no one cure is going to help all of us anyhow.