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Author Topic: The most annoying survey yet  (Read 327 times)
cassandra
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When all else fails run in circles, shout loudly

« on: September 27, 2018, 12:03:08 AM »

I started this survey with some interest, hope even. Couldn't make it passed question 6. What do you think/feel?


  https://esrdpatientpreferences.sawtoothsoftware.com/cgi-bin/ciwweb.pl?hid_s=Av8AAATULgFtbTNIT9IChwxv538zAAAANPgYOF1cBnx95jWrPVjXTT34HzReVQN7fuE1sCBZ3k4o5AJCLy5APT2kZ_5TWrhN2Qnz3LCw7pWSD99a0VzLTw
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
kristina
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« Reply #1 on: September 27, 2018, 01:50:28 AM »

Hello Cassandra, I have really tried to read and estimate this survey, but I could not read it, because of the following message, which came up every time I tried and "clicked" on the link:

Sawtooth Error # 302
The link to the survey that you are using will not work. Please enter the survey again using the original link that was given to you.

Please try to refresh your browser or try to backup and submit again. If the error continues please contact the survey administrator.


Best wishes from Kristina. :grouphug;

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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Simon Dog
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« Reply #2 on: September 27, 2018, 06:00:03 AM »

It works without the field at the end that appears to be a per-user identifier:


  https://esrdpatientpreferences.sawtoothsoftware.com/cgi-bin/ciwweb.pl

That the tag specific to you gets added to the URL as you move through the survey.  This is how each page of the survey links to the other pages without using cookies or sessions.
« Last Edit: September 27, 2018, 06:11:13 AM by Simon Dog » Logged
iolaire
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« Reply #3 on: September 27, 2018, 07:20:52 AM »

I completed the whole thing (because of Simon's fixed link from Cassandra).  All 19 questions where similar to the first six, then there were a few energy/health/mental health questions at the end.

Overall I didn't like the obvious outlook shown from the survey.  It seems like they are evaluating dialysis access implants and then also things like a kidney replacement.  Overall it seemed like they wanted to know if you would be willing to have up to three major surgeries per year to maintain an access or kidney replacement. 

It seems very risky to be doing three major surgeries per year.  That amount of surgery would also mean that type of technology would not be available to those who need it most because they are infirm and dialysis is just another problem of a long list of health problems.  i.e. the technology might have the same health restrictions we see in the transplant program with lots of people not being able to use it because there are worries that the people can not survive the surgeries.

The only plus I could see is an implantable dialysis access might be a godsend for people whose veins are not conducive for a fistula.  It also might bring needles out of the equation but I'm sure that will add the catheter style infection risks.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: September 27, 2018, 09:48:55 AM »

Thanx all


   :waving;
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Michael Murphy
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« Reply #5 on: September 27, 2018, 10:21:28 AM »

Took survey, a clue in what this is about is in the email address at the end. It was to a person at UCSF, which is the University of California at San Francisco.  This is where the current leader in Implantable Artificial Kidneys is based.
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Simon Dog
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« Reply #6 on: September 27, 2018, 06:24:39 PM »

My reaction to even an annual major survey for maintenance was YIKES!
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