LO Portal Survey

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* 1.
My kidney connection is (please answer from your perspective):

I have been told that my kidneys don’t work well

I am on dialysis

I have a functioning kidney transplant

I take care of someone who has kidney disease

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* 2. I am:

Male

Female

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* 3. My age is:

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* 4. The country I live in is:

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* 5. My work status is:

I work full-time

I work part-time

I am looking for a job

I can’t work because of my health

I am retired

I am a homemaker

I am a student

I volunteer

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* 6. My role in my own healthcare when I am at home is:

I feel that it is my job to know about my disease and treatment.

I self-manage and do everything for myself.

I need some help, but do as much as I can by myself.

I could not get by without someone else to do things for me.

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* 7. What would help ME are tools and resources to learn how to:

	Not helpful	Slightly helpful	Fairly helpful	Helpful	Very helpful
Track my diet, blood tests, and medications	Track my diet, blood tests, and medications Not helpful	Track my diet, blood tests, and medications Slightly helpful	Track my diet, blood tests, and medications Fairly helpful	Track my diet, blood tests, and medications Helpful	Track my diet, blood tests, and medications Very helpful
Understand my disease and the treatment options for it	Understand my disease and the treatment options for it Not helpful	Understand my disease and the treatment options for it Slightly helpful	Understand my disease and the treatment options for it Fairly helpful	Understand my disease and the treatment options for it Helpful	Understand my disease and the treatment options for it Very helpful
Cook foods I can eat	Cook foods I can eat Not helpful	Cook foods I can eat Slightly helpful	Cook foods I can eat Fairly helpful	Cook foods I can eat Helpful	Cook foods I can eat Very helpful
Be more physically fit	Be more physically fit Not helpful	Be more physically fit Slightly helpful	Be more physically fit Fairly helpful	Be more physically fit Helpful	Be more physically fit Very helpful
Travel for work and holidays	Travel for work and holidays Not helpful	Travel for work and holidays Slightly helpful	Travel for work and holidays Fairly helpful	Travel for work and holidays Helpful	Travel for work and holidays Very helpful
Have healthy relationships	Have healthy relationships Not helpful	Have healthy relationships Slightly helpful	Have healthy relationships Fairly helpful	Have healthy relationships Helpful	Have healthy relationships Very helpful
Manage money	Manage money Not helpful	Manage money Slightly helpful	Manage money Fairly helpful	Manage money Helpful	Manage money Very helpful

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* 8. In a perfect world, I would have had the information I wanted when :

I first found out that I had early kidney disease

My kidneys started to get worse

My kidneys failed and I had to choose a treatment

I crash-landed into dialysis

I was receiving dialysis

I was thinking about getting a kidney transplant

I got a transplant and had to take care of it

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* 9. I want to learn how to:

	Not helpful	Slightly helpful	Fairly helpful	Helpful	Very helpful	Does not apply
Build my confidence	Build my confidence Not helpful	Build my confidence Slightly helpful	Build my confidence Fairly helpful	Build my confidence Helpful	Build my confidence Very helpful	Build my confidence Does not apply
Manage anger	Manage anger Not helpful	Manage anger Slightly helpful	Manage anger Fairly helpful	Manage anger Helpful	Manage anger Very helpful	Manage anger Does not apply
Manage stress	Manage stress Not helpful	Manage stress Slightly helpful	Manage stress Fairly helpful	Manage stress Helpful	Manage stress Very helpful	Manage stress Does not apply
Improve my memory	Improve my memory Not helpful	Improve my memory Slightly helpful	Improve my memory Fairly helpful	Improve my memory Helpful	Improve my memory Very helpful	Improve my memory Does not apply
Put together a resumé or CV	Put together a resumé or CV Not helpful	Put together a resumé or CV Slightly helpful	Put together a resumé or CV Fairly helpful	Put together a resumé or CV Helpful	Put together a resumé or CV Very helpful	Put together a resumé or CV Does not apply
Effective communication	Effective communication Not helpful	Effective communication Slightly helpful	Effective communication Fairly helpful	Effective communication Helpful	Effective communication Very helpful	Effective communication Does not apply
Interview for a job	Interview for a job Not helpful	Interview for a job Slightly helpful	Interview for a job Fairly helpful	Interview for a job Helpful	Interview for a job Very helpful	Interview for a job Does not apply
Make a presentation	Make a presentation Not helpful	Make a presentation Slightly helpful	Make a presentation Fairly helpful	Make a presentation Helpful	Make a presentation Very helpful	Make a presentation Does not apply
Be a leader	Be a leader Not helpful	Be a leader Slightly helpful	Be a leader Fairly helpful	Be a leader Helpful	Be a leader Very helpful	Be a leader Does not apply
Build a team	Build a team Not helpful	Build a team Slightly helpful	Build a team Fairly helpful	Build a team Helpful	Build a team Very helpful	Build a team Does not apply
Handle conflict	Handle conflict Not helpful	Handle conflict Slightly helpful	Handle conflict Fairly helpful	Handle conflict Helpful	Handle conflict Very helpful	Handle conflict Does not apply
Use social media	Use social media Not helpful	Use social media Slightly helpful	Use social media Fairly helpful	Use social media Helpful	Use social media Very helpful	Use social media Does not apply
Learn how to use a computer	Learn how to use a computer Not helpful	Learn how to use a computer Slightly helpful	Learn how to use a computer Fairly helpful	Learn how to use a computer Helpful	Learn how to use a computer Very helpful	Learn how to use a computer Does not apply
Improve my sales skills	Improve my sales skills Not helpful	Improve my sales skills Slightly helpful	Improve my sales skills Fairly helpful	Improve my sales skills Helpful	Improve my sales skills Very helpful	Improve my sales skills Does not apply
Write a business plan	Write a business plan Not helpful	Write a business plan Slightly helpful	Write a business plan Fairly helpful	Write a business plan Helpful	Write a business plan Very helpful	Write a business plan Does not apply
Start a business	Start a business Not helpful	Start a business Slightly helpful	Start a business Fairly helpful	Start a business Helpful	Start a business Very helpful	Start a business Does not apply

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* 10. I like to learn by:

Online PowerPoint presentations

Live webinars

Downloadable PDF files

Audio files

Video tutorials (e.g. cooking )

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* 11. The challenges that keep me from working are:

Not enough energy

Not enough skills or experience

Don’t know how to put myself forward

Need help to find job opportunities

Treatment schedule that gets in the way of work

Other (please specify)

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* 12. Three things I would like to see most in a new web portal, in order of importance, are:

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* 13. Three kidney non-profit groups from the UK and US are joining forces: the British Kidney Patient Association MSS CKD and MEI. Our goal is to help patients manage their health and feel their best. And, we want to help working-age patients find and keep jobs!

Thank you for your help! Please download the free Dialyze to Live booklet. If you would like to stay involved and give more input in the future, please enter your email below.

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* 1. My kidney connection is (please answer from your perspective):

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* 2. I am:

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* 3. My age is:

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* 4. The country I live in is:

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* 5. My work status is:

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* 6. My role in my own healthcare when I am at home is:

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* 7. What would help ME are tools and resources to learn how to:

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* 8. In a perfect world, I would have had the information I wanted when :

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* 9. I want to learn how to:

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* 10. I like to learn by:

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* 11. The challenges that keep me from working are:

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* 12. Three things I would like to see most in a new web portal, in order of importance, are:

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* 1.
My kidney connection is (please answer from your perspective):