Tell the NKF:
Home Dialysis — what options are offered survey

This survey is intended to provide evidence to the Home Dialysis working group, as to whether patients are both informed about the Dialysis options available, and given a real choice as to the Dialysis therapy that they are offered. The Working Group is run by the NKF and chaired by Lord Davies of Coity.

The full membership of the Working Group is as follows:

Lord Davies of Coity CBE
Timothy Statham OBE
Lucy Botting
Dr Edwina Brown
Richard Cooke
Dr Richard Fluck
Nesta Hawker
Marion Higgins
Jane MacDonald

This survey is anonymous.

Only complete this survey if you have had dialysis, are on dialysis now, or will need dialysis in the future.

It will take 5 to 10 minutes to complete this survey.

Please skip past questions you would prefer not to answer.

1. Have you been on Dialysis in the past?

Yes

2. Are you currently receiving Dialysis?

Yes

If you marked Yes please go to question 5.

3. Have you been told that you will need Dialysis in the future?

Yes

If you marked No please go to question 5.

4. Please estimate when you are likely to need Dialysis:

0-6mnths

6mnths - 1 yr

1-3 yrs

3-5 yrs

5-10 yrs

10-30 yrs

5. Has your Nurse/Consultant explained to you (either in the past or recently) that the following options are available for suitable patients? Mark all that apply:

Pre-Dialysis Transplant

Peritoneal Dialysis

Haemodialysis

Peritoneal Dialysis at home

Assisted Peritoneal Dialysis

Haemodialysis at home

6. If you are currently receiving Dialysis mark the option that best describes your treatment:

I receive Peritoneal Dialysis in Hospital

I undertake Peritoneal Dialysis at home

I receive assisted Peritoneal Dialysis at home

I receive Haemodialysis in hospital twice a week

I receive Haemodialysis in hospital three times a week

I undertake Home Haemodialysis twice a week

I undertake Home Haemodialysis three times a week

I undertake Home Haemodialysis four times a week

I undertake Home Haemodialysis five times a week

I undertake Home Haemodialysis six times a week

I undertake Home Haemodialysis seven times a week

I undertake Home Haemodialysis nocturnally

7. Have you been offered? Mark all that apply:

Pre-Dialysis Transplant

Peritoneal Dialysis

Haemodialysis

Peritoneal Dialysis at home

Assisted Peritoneal Dialysis

Haemodialysis at home

8. Have you been handed literature describing these options by hospital staff – or are they available in the hospital Mark all that apply:

Pre-Dialysis Transplant

Peritoneal Dialysis

Haemodialysis

Peritoneal Dialysis at home

Assisted Peritoneal Dialysis

Haemodialysis at home

9. Have you ever been denied one of the following, after requesting it? Mark all that apply:

Peritoneal Dialysis

Home Haemodialysis

10. If you were denied one of the above, which best describes the reason for the refusal:

I have been told I am not clinically suitable for the treatment

The Hospital cannot afford it

The Consultant does not favour its use

The Trust does not provide funds for Home Haemodialysis

The Trust does not provide funds for Home Peritoneal Dialysis

11. Have you ever declined? Mark all that apply:

Home Peritoneal Dialysis

Home Haemodialysis

12. Which of the following statements do you agree with? Mark all that apply:

Not enough information on this topic is available to patients

Not enough information on this topic is available to clinicians and/or nurses

Patients do not really want Home Dialysis

Primary Care Trusts (PCTs) believe home treatment is too expensive

Patients do not appreciate the health benefits of home dialysis

PCTs do not fully understand the health benefits to patients of home dialysis

There is too much administrative burden for PCTs to be able to offer home dialysis

Dialysis is not a priority for PCTs, so they lack motivation to improve access to home dialysis

Patients are scared of home treatment

PCTs should be obliged to offer home dialysis to suitable patients

PCTs do not understand that Home Dialysis is cheaper than Hospital Dialysis

13. If you travel to a hospital/Unit to receive Dialysis, which method of transport do you take?

I use transport provided by my Hospital/Renal Unit

Car (drive yourself)

Car (driven by someone else)

Public transport

Walk

14. If you travel to a hospital/Unit to receive Dialysis, how long in total do you spend travelling to and from the hospital each week?

Less than 30 mins

Less than 1 hour

Between 1 hour and 2 hours

Between 2 hours and 3 hours

Between 3 hours and 5 hours

Between 5 hours and 10 hours

Over 10 hours

15. If you travel to a hospital/Unit to receive Dialysis, how much do you spend on transport in an average week?

Less than £5

Between £5 and £10

Between £10 and £15

Between £15 and £20

Between £20 and £35

Between £35 and £50

Over £50

16. If you travel to a hospital/Unit to receive Dialysis, have the times you receive your care ever been antisocial and caused you inconvenience?

Yes, occasionally

Yes, frequently

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

The National Kidney Federation and the Home Dialysis Working Group would like to thank AMGEN Limited, BAXTER Healthcare Ltd, and Insight PA for their assistance in compiling this survey.

To be Completed by Every Respondent:

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

If you marked No please go to question 19

18. Geographical region:

19. 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.

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:-
The Point
Coach Road
Shireoaks
Worksop
Notts
S81 8BW

Tel: (01909) 544999

Fax: (01909) 481723

Helpline: (0845) 601 02 09

E-mail:

Page created: 3 February 2010

Last updated: 3 February 2010

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Tell the NKF:Home Dialysis — what options are offered survey

To be Completed by Every Respondent:

Tell the NKF:
Home Dialysis — what options are offered survey