Appendix 1

Living with transplantation and dialysis as a young adult

This short questionnaire is to ask you what life is like for you as a young adult living with a renal transplant or on dialysis. It is part of a research project being carried out at Surrey University, which aims to help you and people like you to stay well longer and obtain better health care.

Your replies will be confidential and you (and the hospital where you are looked after) will not be named on my records nor on anything I will write when the research is finished.

Attached is an information sheet and consent form. Please read the sheet and sign the consent form before you do the questionnaire.

I hope you will complete the questionnaire as young adults I have already talked to are very keen for this research to be as comprehensive as possible. It should take 15 to 20 minutes to complete.

At the beginning are some questions about you, which will help me to understand a bit more about your answers later. Please ask me for a large print version if it would be helpful (Helen Lewis: ; tel: 01372 725716).

Please tick or write in the boxes (for more room, please write on an extra sheet of paper).

1. About you

a. When were you born? ____/____/____ b. Are you: Male ? Female ?

c. Where do you live now? (town/nearest town only) ______

d. Who do you live with?

your family in your parent/s home your partner friends alone

e. Is the home you live in: rented? bought (being bought on mortgage)?

f. How many children have you, if any?

g. How many brothers and sisters have you, if any?

Number of brothers / Age of brothers
Number of sisters / Age of sisters

h. What is your height in metres? ___ What is your weight in kilograms? ___

2. To what ethnic group do you belong? Are you

White Black Asian Other

If other, are you Mixed race Arab Greek Cypriot Turkish Cypriot None of these (tick one box).

3a. What educational level have you reached so far?

GCSE A level or equivalent First degree or equivalent Higher degree

Other Please specify: ______None

3b. What is your highest science/biology qualification, if any? ______

4a. Are you employed at the moment?

Yes If yes, is it part-time paid work full-time paid work voluntary work other

No If no, are you a student not well enough to work can’t find suitable work

b. What kind of work do you do?

c. What is your monthly-earned income?

None less than £500 £501-£1000 £1001- £1500 £1501-£2000 over £2001

d. What is your monthly-unearned income?

None less than £200 £201 - £500 £501-£1000 over £1000

e. Where does your unearned income come from?

5. Questions about your kidney failure

a. When did your kidneys fail (when did you first have dialysis or a transplant)? Month___ Year ___

b. How old were you then? ______years

c. What caused your kidneys to fail?

d. What kidney replacement treatment are you on now? (please tick)

Working transplant Haemodialysis CAPD/CPD APD

e. How long have you been on this treatment?

Up to one year 1-2 years 2-3 years 3-4 years 4-5 years

5-10 years more than 10 years

f. Please tell me about your treatment history (including your treatment now)

How many times? / Which year/s did you start? / For how long? / Why the change
Any transplants
Haemodialysis
CPD/CAPD
APD

g. Do you see yourself as having a disability? Yes No Sometimes

Are you registered as a person with a disability? Yes No

h. Where do you get personal help and support? (tick as many as apply)

Family friends partner Kidney Patients’ Association internet renal unit medical staff renal unit psychologist renal unit counsellor renal unit social worker teacher family therapist no-one other, please specify

6. Questions about how you look after yourself

a. How important to you is: / Very important / Quite important / Not very important / Not at all important
Looking good? / / / /
Feeling good about your appearance? / / / /
Eating healthily? / / / /
Being as fit as you can be? / / / /
Taking your medication? / / / /
Attending clinic regularly? / / / /
Checking your own blood results? / / / /
Being an expert or knowledgeable patient? / / / /
Feeling some personal control of your health? / / / /
Complying with advice about your treatment or health? / / / /

b. What do think is the best way for you to keep well?


7. Questions about your everyday life

a. How important to you is: / Very important / Quite important / Not very important / Not at all important
Having one or two close friends or family? / / / /
Having a large number of friends? / / / /
Having an intimate partner/husband/wife? / / / /
Being able to join in with all that your friends do? / / / /
Meeting new people and doing new things? / / / /
Doing the same things socially every week or month? / / / /
Being well enough to work? / / / /
Having a paid job? / / / /
Having a voluntary job? / / / /
Studying or training? / / / /
Having enough money to be financially independent? / / / /
Having a religious faith? / / / /
Having a hobby or interest? / / / /
Having access to a computer and the internet? / / / /
Telling people you work with/study with about your illness? / / / /
b. How often do you: / Every day / Most days / Weekly / Rarely / Never
Have a drink of beer, wine, spirits or similar? / / / / /
Have a cigarette/s? / / / / /
Eat 5 pieces of fruit and vegetables? / / / / /
Take exercise or take part in a sport? / / / / /
Go out socially with family? / / / / /
Go out socially with friends? / / / / /
Miss taking your medication? / / / / /
Miss outings because you feel unwell? / / / / /

c. What sort of things do you like doing best?

8. Questions about your current hospital clinic experience

a. Which hospital looks after you on a regular basis? ______

b. Are you attending an adult renal clinic now? a paediatric renal clinic now?


c. If you are attending an adult clinic, have you ever attended a paediatric clinic? Yes No

e. Clinic experiences / Always / Often / Not very often / Never / Not
applic-
able
Is your appointment at a time convenient for you? / / / / /
Is your clinic appointment on time? / / / / /
Does it interfere with your working/studying? / / / / /
Are there are other young adult patients at your clinic? / / / / /
Can you see the doctor you want to see? / / / / /
Can you can see a social worker if you want? / / / / /
Can you can see a dietician if you want? / / / / /
Can you can see a counsellor if you want? (see also below) / / / / /
Do you understand what your doctor tells you? / / / / /
Do you feel you can trust the doctor who looks after you? / / / / /
Do you understand what your nurse tells you? / / / / /
Do you feel you can trust the nurse who looks after you? / / / / /
Do you feel that clinic staff understand what you tell them? / / / / /
Would you like to see a counsellor or psychologist if one were available? / / / / /

f. What are best things about being at your clinic?

g. What are worst things about being at your clinic?

9. Questions about the challenges of having end stage renal failure

a. How far has having renal failure: / Completely / A lot / A little / Not at all
Upset your plans for the future? / / / /
Prevented you from getting the qualifications you want/ed? / / / /
Prevented you from doing the job you want/ed? / / / /
Made it hard to get any job? / / / /
Made it more difficult to make close friends? / / / /
Made it more difficult to keep friends? / / / /
Made you feel very short of time for other things? / / / /
Made it difficult to talk about yourself? / / / /
Made you feel abnormal or different from other people? / / / /
Made you upset about the scars on your body? (added after pilot) / / / /
Made you worry about the future? (added after pilot) / / / /
Made you more dependent on friends and family than you like? / / / /
Made you more dependent on strangers than you like? / / / /


b. Have there been any good things about having renal failure?

Yes No If yes, please tell me about them.

10. Questions about how you’ve been feeling over the last month or so

a. Feeling over the last month / All the time / Most of the time / Some of the time / A little of the time / None of the time
Have you been feeling well?
Have you been having pain?
Have you been feeling full of energy?
Have you been feeling tired or worn out?
Have you been feeling happy and peaceful?
Have you been feeling worried or anxious?
Have you been feeling downhearted or depressed?
Have you been feeling lonely or isolated?
Have you felt like seeing your friends?
Have you been feeling pressure to be cheerful?
Have you been talking to friends about how you feel?
Have you been talking to family about how you feel?

b. Is there anything else you want to say about how you’ve been feeling?

11. Questions about the wider world

a. What do you think and feel about the way people with kidney disease are written about in newspapers and seen in TV programmes?


b. Tell me about how much your friends really understand about living with kidney failure or with a transplant?

c. What do you think casual acquaintances think if they know that you’re living with dialysis or with a transplant?

d. What do you think would be the best thing the NHS could do to improve the quality of your life at the moment?

12. Anything else you want to say?

Are you willing to be interviewed for about an hour in your own home or another private venue about your experiences of living with kidney disease, but talking in a bit more detail?
Yes No
If yes
Please provide your name contact details below:
Name:
Home address:
Tel: Landline
Mobile
Email:

Thank you very much for completing the questionnaire.