Rant and Quality of Life survey

[circleNthedrain]

Here is a link to a survey by Life Options and the Rand Corp.     

http://www.lifeoptions.org/kdqol/index.php

  It is a survey to determine kidney disease quality of life (KDQOL).  First let me say, only take this survey if you are completely bored and have nothing else to do.  It is a lengthly survey, probably 100 questions, and in the end you will have 5 scores which will compare you with other dialysis patients.  In my estimation, completely useless information, but perhaps you all will feel differently.

I was given this survey by the social worker at my dialysis unit yesterday.  It was my own fault, as I failed to "be asleep" when she approched.  By the time she returned with the results of my survey and reviewed them with me (4 pages) I was dumbfounded!  Even one of the tech's came by and said "why is your B/P so high?"  It had been 120/80 but when the social worker finished with the results of the survey, my BP was 160/100!

I won't bore you with all the details, but 2 of the suggestions for an improved life for me were:
1.  Take up sports, maybe bowling.
2.  Walk more places rather than drive.
Both good suggestions, but since I have been in a wheelchair for 2 years, Not likely to happen.
Keep in mind, the social worker, who knows me and my situation, is sitting right next to me and reading this, like she truely belives my life will be greatly improved by this information.  I was absolutely astounded that someone would have the nerve to sit and read 4 pages of this crap to me.

Sorry for the rant guys, I have been playing this kidney game for 29 years and thought I had seen it all, but I was wrong!

Hope some of you can have some fun weth this.

[monrein]

I did a similar test many years ago when I was first on dialysis and at the end I cracked up because the social worker asked me if anyone had told me yet that I was on dialysis.  I find this go around much more difficult.  I'm not bothering to take the survey again.  LOL.

[nursewratchet]

Isn't this crap.  Unfortunately, it is required, however, my Social Workers are telling patients up front that they can refuse to participate.  End of story.  Then they just write "patient refused to answer".    Not many of our patients are actually anwering this stuff... There one question on there about sex life!  Really???   

[Zach]

 There one question on there about sex life!  Really???   

Some of us still have a sex life.

[Wallyz]

The problem with these quality of life surveys is that they measure your satisfaction in relation to your expectations of life on dialysis,  The easiest way for  a center to increase it' score is to lower the expectations of patients.

[Lucinda]

Even though I haven't started dialysis yet I did the survey because if I have all the pre-dialysis symptoms and they are worse now than they will be on dialysis I thought I would give it a go.

In three areas they said the average score was around 48.  In one section I got 89.  In that section they said exactly what the other sections said when I was closer to the average score.  Basically it said that you are in the same position as many others who have kidney disease.  Don't think this survey is too ligit at all.  Love to know what Zac thinks!

[circleNthedrain]

Sorry Lucinda, but I don't think this survey is based in reality.  I do think it is typical of the studies done on dialysis patients by people not on dialysis.  Hope you didn't have any "drop in" company while you were taking the survey!

[thegrammalady]

my question is why did the sw think she needed to read to you. last time i looked i'd been reading for well over 50 years and at least 4-5 years above grade level. my center knows better than to try to read me anything, they just leave it and if it needs to be signed i determine if i'm going to sign it and hand it back. there have been things i've refused to sign. as an example i refuse to sigh anything that still says renal care group. fresenius has owned my center for a almost 3 years, i think it's high time they got the paperwork updated. especially since if any legal issues come up the first thing they are going to do is drag everything out and say "see, you signed this". just call me the management personnel from hell! 

ok, so today i was curious enough to take the test and guess what, i think it could be applied to any disease you want. as an example i can't walk up several flights of stairs. but that has nothing to do with esrd, i have asthma. in other words i think the entire thing is pure bunk!

[peleroja]

Fascinating.  According to the survey I practically don't even know I have kidney disease!  Some folks just adjust better, I guess.

[circleNthedrain]

ok, so today i was curious enough to take the test and guess what, i think it could be applied to any disease you want. as an example i can't walk up several flights of stairs. but that has nothing to do with esrd, i have asthma. in other words i think the entire thing is pure bunk!

This was exactly my point!  It asked nothing about many very important things.  Are you in a wheelchair?  Do you have vision problems?  Breathing problems?  Missing limbs?  The list could go on and on with problems effecting ESRD patients.  It said they studied tens of thousands of dialysis patients to develop this survey.  REALLY??!!  What a WASTE of money.  I also discovered this survey was 15 years old!

I think I'm just angry I let myself get sucked into this.  I know better.  Just goes to show the lengths I will go to pass those 3 hours!

[Zach]

What a WASTE of money.  I also discovered this survey was 15 years old!

Another way to justify a fat government contract. Time for some competition.

[RightSide]

Another problem with the survey is that it doesn't take into account how long you have been on treatment.

A newbie like me, who just started dialysis, needs to be patient about seeing any improvement in their health.  (And I've been patient about that.)  Whereas if someone has been on treatment for many months with no improvement, that's more serious.

So for a newbie, the best recommendation such a survey should make is something like, "Be patient.  Symptoms such as itching, weakness caused by anemia, etc., can take months to alleviate."

[Kitsune]

I took this B.S. survey and it informed me that I have other health issues  and was as likely to be hospitalized as other patients in my age group and likely to die as soon as them. This is bull, as I retain my health as other people at my center drop like flies and I have only been hosptalized once (almost everyone else in my center is hospitalized at least 2-3 times a year) since I started dialysis and I am the healthiest person I know (dialysis or no dialysis) and have nothing else wrong but CKD. I am even on the transplant list as well, with no other health issues. This survey is a joke. I hope they don't try this crap at my center, I will refuse.

[Stacy Without An E]

I took the survey and it told me I died two years ago.

And I owe them $37.50 for their trouble.

[twirl]

I never turned my survey in and my social worker gave up
she said teachers are the worst about turning in papers
 

a son of a patient told our social worker it looks like she runs a kindergarten - he was referring to all the crap she puts up to motivate us -
very elementary looking
I noticed she took some things down
a tree with an apple going up the tree - if we all have good numbers -- to reach the top of the tree - does nothing for me

[boxman55]

I took the survey and it told me I died two years ago.

And I owe them $37.50 for their trouble.

LOL  ...Boxman

[Kitsune]

I never turned my survey in and my social worker gave up
she said teachers are the worst about turning in papers
 

a son of a patient told our social worker it looks like she runs a kindergarten - he was referring to all the crap she puts up to motivate us -
very elementary looking
I noticed she took some things down
a tree with an apple going up the tree - if we all have good numbers -- to reach the top of the tree - does nothing for me

An apple going up a tree is supposed to motivate adults? Wow, that wouldn't have even motivated me in junior high, let alone at 31. Oh wait, our kidneys don't work, so our brains must not either. Maybe instead of using their time to put up this junk, they should give real education, like how to get on the transplant list if you are healthy enough and are not on it yet or how to know if your access is clotting...something a little more useful than an apple on a tree!