PROJECT BIONICS

Michigan Bionic Patient Survey, 2006

Dialysis

Thank you for logging into the Michigan Bionic Survey. You have been selected because you (or your child) were treated with an artificial organ at the University of Michigan. Project Bionics is collecting information regarding the history and current usage of artificial organs. The Michigan Bionic Patient Survey is one part of that overall project.

This survey will provide you with some information about artificial organs and ask you about the artificial organs that were used in your or your relative’s, care. This information will be part of an archive to document the history and usage of artificial organs.

Project Bionics was established in 1998 to collect, document, and present the history of man-made, artificial organs. It is a joint project of the American Society for Artificial Internal Organs, the Smithsonian Institution, and the National Library of Medicine. The activities of Project Bionics are recorded on the website http://echo.gmu.edu/bionics/, along with links to other information about artificial organs.

Project Bionics has a grant from the Sloan Foundation (web site address: www.sloan.org/main.shtml) to document the history of science using the Internet. One important part of this project is to document the experience of patients whose life has been changed by artificial organs.

The Michigan Bionic Patient Survey is supported by the Sloan Foundation grant to determine how effective the Internet can be in recording actual patient experiences. This survey will take about 5 minutes to complete. Thank you very much for helping us out. When the study is completed, you can review the results of the survey by returning to the Project Bionics website.

1. Do you use the Internet?

Yes
No

2. If yes, do you use the Internet to...

look up information?

Yes
No

access interactive services (buying, selling, questionnaires, etc.)?

Yes
No

e-mail?

Yes
No

visit chat rooms?

Yes
No

other (music, telephone, courses, etc.)?

Yes
No

3. Have you used the Internet to learn more about your disease and the use of artificial organs?

Yes
No

4. If so, have you used the Internet to...

search for websites?

Yes
No

visit a specific website?

Yes
No

e-mail?

Yes
No

visit chat rooms?

Yes
No

other?

Yes
No

5. How long have you been on dialysis?

Less than 1 year
1-2 years
2-5 years
More than 5 years

6. How often do you typically have dialysis?

2 times/week
3 times/week
4 times/week
More than 4 times/week

7. Where do you have dialysis?

In an ambulatory dialysis center
In a hospital-based center
I dialyze at home
Some combination of the above

8. How long are your typical dialysis sessions?

3 hours
4 hours
5 hours
6 or more hours

9. Do you ever dialyze at home?

Yes
No

10. Have you taken vacations or trips requiring dialysis outside of your normal dialysis center?

Yes
No

11. If yes, obtaining dialysis outside of my center is:

Easy
Complicated
Very difficult
Not worth it

12. A few hours after dialysis treatment, how do you feel?

Better
Worse
Unchanged
Can't tell any difference

13. How do you and your doctor judge the effectiveness and need for dialysis? (Please list in order of importance below.)

a. Serum creatinine
b. BUN (blood urea nitrogen)
c. Weight change
d. Calculated clearance
e. Based on how you feel
f. A regular schedule, whether I need it or not

14. If I had my choice I would rather have dialysis...

more frequently?

Yes
No

less frenquently?

Yes
No

for longer periods?

Yes
No

for shorter periods?

Yes
No

at home?

Yes
No

15. Have you ever considered a kidney transplant?

Yes
No

16. If no, why not?

Worried about an operation
No suitable donor
Don't want to take immunosuppressive drugs
Doing just fine on dialysis
Doctor didn't recommend it

17. Have you had a kidney transplant?

Yes
No

18. If no:

Are you on a waiting list?

Yes
No

Are you on more than one waiting list?

Yes
No

Have you had a previous transplant that failed and required going back on dialysis?

Yes
No

19. My understanding of how dialysis works to treat kidney failure is:

Very good
Average
Not much
Hardly any

20. My doctor and dialysis nurses have explained hemodialysis and kidney failure to me:

Very completely
Enough to get by
All I want to know
I really don't understand how dialysis works

21. During my disease I have learned about the history of dialysis:

A lot
Some
Not at all
Don't care

22. As a result of this survey my interest in the history of the artificial kidney is:

Unchanged
Increased
Don't care

23. Researchers are working on new treatments for chronic kidney failure. If it were possible, the next steps in treatment would be: (Please list in order of importance below.)

a. Kidney transplant from a human
b. Kidney transplant from an animal
c. Dialysis that I could do at home while I am sleeping at night
d. An implantable device that would work for 6 months to a year without having to be changed

24. As a result of this survey would you like to know more about artificial organs?

Yes
No, I know enough already
No, I don't want to know more

25. If yes, I would like to know more about: (Please list in order of importance below.)

a. The history of artificial organs in general
b. The history of my artificial organ
c. The current use of artificial organs
d. Research on the future of artificial organs

26. Please type in any comments on your experience with artificial organs.

PROJECT BIONICS

Michigan Bionic Patient Survey, 2006

Dialysis

Thank you for completing the survey!

Survey created and managed using the Survey Builder, one of the tools from the Roy Rosenzweig Center for History and New Media