UK National Kidney Federation - Surveys Zone

Tell the NKF (surveys)

If you have had a Kidney Transplant, the National Kidney Federation in conjunction/collaboration with one of our sponsors Astellas Pharma Ltd would very much like you to complete this survey form (anonymously) and return it to us electronically by clicking the submit button at the end.

Please do not complete this survey if you have not had a Kidney Transplant.

Transplantation, like many other areas of renal medicine is undergoing a period of great change. The publication of the Organ Donation Task Force Report in January 2008, and the acceptance of that report by Government, holds out the prospect of a 50% increase in the numbers of Transplant operations during the next five years. This is truly great news, a “big win” for the NKF and will go a long way towards improving the quality of life for our members – and indeed saving lives.

The NKF believes that there is still more to be achieved, and as a first step we need to gather information – hence this survey.

The results will be analysed and then published in a future edition of Kidney Life. The NKF will share the conclusions of the survey with one or more industry partners involved in renal care. We may also use the results with the media and for discussion at scientific meetings and conferences.

This survey is confidential – you do not have to identify yourself. Neither the survey’s sponsor, Astellas Pharma Ltd, nor any other third party will be given access to your email address which is asked for by the NKF for verification purposes only.

Thank you for your time.

Ray Mackey

Chairman
National Kidney Federation

Please skip past questions you would prefer not to answer.

A. Characteristics of your Transplant

To start, please could you provide some details on your transplant.

1. Which organ(s) has been transplanted?

Liver

Kidney

Pancreas

Heart

Lung

Please give the (approximate) date of your transplant

2. Month of Transplant:

3. Year of Transplant:

4. How many kidney transplants have you had?

None

One

Two

More than two

If you marked None please go to question 47.

B. Medicines

Please now think about the medicines you take on a daily basis. Please consider all the medicines you take, not just those related to your transplant.

5. In total, how many tablets/capsules do you take daily? Please select the total number of actual tablets/capsules you take:

6. How many different types of medicines do you take daily?

7. How many times per day do you take your medications? (for example: breakfast, lunch, dinner = 3. If you only take them with breakfast answer = 1):

8. To what extent does taking your medication cause difficulty in your daily life? (Please select a number between 1 and 10, where 1 means it does not limit your daily life at all and 10 means it limits you greatly):

9. Do you have any side effects relating to the medication you take?

Yes

10. How do you remember to take your medication?

Memory

Looking at the instructions my doctor gave me

Looking at the timetable made for me

Asking a family member or helper/friend

Using strategies to remember to take the medication such as alarms, notes.....

Other

11. If a medicine that you take twice a day (e.g. at breakfast and dinner) could be taken just once a day, which dose would you prefer to take?

I would prefer to take the morning dose only

I would prefer to take the night dose only

12. Why would you like to take this dose?

It allows me more flexibility to organise my free time or meeting with friends

It suits my work timetable

It suits my family life

It is more convenient for me

It is easier to remember to take this dose

Other

13. Do you take any of these medicines? (Please mark all that apply):

Advagraf®

Azathioprine

Cellcept®

Myfortic®

Neoral®

Prednisolone

Prograf®

Rapamune®

Sandimmune®

C. Immunosuppressant (anti-rejection) medicines

The next series of questions are specifically focused on your immunosuppressant (anti-rejection) medicine i.e. the medicine you take to prevent your transplanted organ being rejected. Please answer the following questions thinking only of your anti-rejection medicine.

14. How many times have you NOT taken your anti-rejection medicine for whatever reason, in the last month?	times

Please select the answer that best describes your situation for each of the next 6 questions;

15. In the last three months, how often have you forgotten to take your anti-rejection medication?

Never

Occasionally (i.e. once or twice)

Sometimes