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Dialysis Patient Choices Online Survey

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Survey for Patients with Chronic Kidney Disease (CKD):
Are patients offered choices about their options and treatments throughout the various stages of their CKD?

Dear Patient,

Thank you for taking your time to fill in the survey. We welcome your honest feedback which will offer an insight into the choices that renal patients are offered.

The topic of patient choice in the NHS has been key over the last 10 years, and this survey is intended to find out to what extent the promises made for patient choice are actually offered to current CKD patients.

This survey aims to understand what choices patients with CKD are currently offered and the role played by CKD patients in clinical decisions, taken to achieve optimal management and treatment of their CKD. It also seeks to understand if patients feel adequately informed about their available choices and if they are encouraged to participate fully in the management and treatment of their CKD.

Thank you for taking the time to complete our survey. The results will be made available accordingly.

Please be reassured that this questionnaire is anonymous and that all of your answers will be handled in the strictest of confidence.

It should you take around 10-15 minutes to complete the survey.

Please skip past questions you would prefer not to answer.

1. Please can you indicate which age range that you fit into?
< 20 years
21-30 years
31-40 years
41-50 years
51-60 years
61-70 years
≥ 71 years
2. How many years has it been since you were diagnosed with CKD?
0-2 years
2-5 years
5-10 years
> 10 years
3. Are you currently receiving dialysis treatment?
Yes
No

If you marked No please go to question 37.

If you are not a UK resident please go to Question 37.

4. Which type of dialysis are you receiving?
Peritoneal
Haemodialysis
5. Where are you currently dialysing?
At Home
At Hospital
At a local Satellite Unit
6. Where would you prefer to receive your dialysis treatment?
At Home
At Hospital
At a local Satellite Unit
7. Do you feel that the advantages and disadvantages of the different types of dialysis available were discussed with you and that your opinions were listened to?
Yes
No
8. Do you feel that you were you offered the dialysis treatment most suitable for you?
Yes
No
9. Who/what do you consider is the main source of information about management and treatment of your CKD?
Nephrologist
Nurse
GP
Internet
Friends/CKD patients

Do you feel that there are sufficient educational materials available at the dialysis centre/GP surgery to enable you to better understand CKD and its complications?

10. Hospital/Satellite Centre:
Yes
No
11. GP Surgery:
Yes
No

Do you think that there is sufficient information available on the following topics?

12. CKD:
Yes
No
13. Lifestyle (eg diet, travel etc):
Yes
No
14. Treatment and medications for CKD:
Yes
No
15. Where do you gain most of the general information on your CKD to help you better cope with your condition? Mark all that apply:
From healthcare professionals
From leaflets in the GP Surgery/Hospital
From websites
From friends and family
From the NKF and/or other Patient Associations
From other CKD patients
Other sources
16. Would you feel more able to be involved in the choices made for the ongoing management of your CKD if you had a better understanding of the disease and treatment options for CKD?
Yes
No
17. What statement do you think best reflects the current situation in the management of your CKD?
a. My healthcare professional ensures that I am fully involved in all treatment decisions and ensures that I have access to all available information.
b. I do feel that I am sufficiently educated but unable to participate in the decision making as much as I would like.
c. I do not feel that I am sufficiently educated around my disease and able to participate in decision making as much as I would like.
d. I have no interest in educating myself about CKD and prefer to leave all decisions to my healthcare professional
18. In terms of decision making around the management of your CKD and any complications, what choice would you prefer?
a. I want the nephrologist to make the final decision about which treatment option is selected
b. I would wish to come to a joint decision about treatment/medication with my nephrologist
c. I wish to choose which treatment/medication after being given all the information by the nephrologist
19. How often, if at all do you see a renal dietician?
Never
Weekly
Monthly
Every 3 months
Annually
20. How often, if at all do you see an anaemia nurse?
Never
Weekly
Monthly
Every 3 months
Annually
21. How often do you see a consultant nephrologist?
Never
Weekly
Monthly
Every 3 months
Annually
22. How frequently does your healthcare professional wash their hands before your consultation and/or treatment?
Always
Mostly
Sometimes
Rarely
Never
Do not know
23. How clean do you think the treatment centre is that you attend for treatment and/or appointments?
Very Clean (excellent)
Clean (good)
Fairly Clean (fair)
Not Very Clean (poor)
Do not know/no opinion
24. Are you aware of a complication of CKD which is called mineral and bone disorder? This is where the levels of calcium, phosphorus and parathyroid hormone (PTH) are abnormal.
Yes
No
25. Have you ever had surgery to remove the parathyroid glands from your neck (parathyroidectomy)?
Yes
No
Do not know

If you marked No or Do not know please go to question 34.

26. If you have received this type of surgery, how long ago was the operation?
0-2 years
2-4 years
> 4 years
Do not remember
Not applicable

If you ticked yes at question 25, did your consultant discuss the success rates for this type of surgery at your Hospital and highlight the risks and benefits of the procedure?

27. Risks:
Yes
No
Do not know
N/A
28. Benefits:
Yes
No
Do not know
N/A
29. Which of the following possible risks of this type of surgery were you made aware of? Please tick all that apply.
Risk of general anaesthetic
Risks of surgical bleed
Risks of low calcium levels (hypocalcaemia)
Possibility of additional dialysis sessions
Risks of low phosphate levels
Risk of infection
Failure of operation
The need for a possible repeat procedure
Problems with fistulas
Extended hospital stay
I was not aware of these risks
I did not fully understand the risks
I do not remember the risks
Not Applicable
30. Did you suffer any complications as a consequence of the surgery?
Yes
No
Do not remember
Not Applicable

If you marked No or Do not remember or Not Applicable please go to question 32.

31. If you answered yes at number 30, which complications did you have?
Complications from general anaesthetic
A surgical bleed
Low calcium levels (hypocalcaemia)
Additional dialysis sessions
Low phosphate levels
Infection
Failure of operation
A repeat procedure
Problems with fistulas
Extended hospital stay
Not applicable
32. How long was your stay in hospital after your surgery?
1-3 days
3-5 days
5-10 days
> 10 days
Do not remember
Nor applicable
33. Overall, how successful do you feel your surgery was?
a. Very successful‚ I feel much better.
b. Reasonably successful‚ I feel better but some post surgical complications.
c. Moderately successful‚ I feel better but some side effects.
d. Not successful‚ further surgery needed.
e. Not applicable
34. If there is any effective alternative to surgery available, do you think your Doctor should discuss this with you?
Yes
No
35. If you have not had surgery but are currently receiving treatment for mineral and bone disorder, please can you advise what type of medication that you are currently taking? Please tick all the choices that apply.
One-Alpha®
Calcichew®
Phoslo®
Zemplar®
Renagel®
Fosrenol®
Mimpara®
Alucaps®
None of the above
36. How many tablets in total do you take on a daily basis to help control your mineral and bone disorder?
0-4
5-9
10-14
15-19
> 20

To be Completed by Every Respondent:

37. Are you a resident of the United Kingdom? Yes
No

If you marked No please go to question 39

38. Geographical region:
39. E-mail address: (to be used for verification purposes only. This will not be passed to any third party.)

If you wish, print out this Survey for your own records – then PRESS “Send Answers”.

Thank you for taking the time to complete this survey – when you are ready press the “Send Answers” button below. If you do not press “Send Answers” then your answers will not reach the NKF.

Thank you for taking part in this survey.

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The original construction of this survey zone was supported by a grant from AMGEN – thank you.

Ongoing use, and content of the zone remains under the sole control of the NKF.

The National Kidney Federation is registered in England and Wales as a Company limited by guarantee (Company No 5272349)
and awarded charitable status (Charity Number 1106735).

Give as You Earn contributions No. CAF GY511.

Registered Office:-
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Tel: (01909) 544999

Fax: (01909) 481723

Helpline: (0845) 601 02 09

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Page created: 22 May 2009

Last updated: 23 May 2009

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