Draft Survey comments

[Guest guest]

Hi all, or maybe this should be just to Carolyn/Oz, but I have copied and read through the draft survey a few times now, and would like to make the following comments:

Firstly, I'm not sure if I agree with the opening comment that "CU is a symptom and not a disease. It is like a cough is to a cold."

I thought it was possible to have chronic urticaria and not any other related health problem, or am I just being naive? When we are told it is "idiopathic", i.e. no known cause, does that mean that there IS a cause but we just have to find it, or that there isn't a cause? Anyway.....

I wondered if we should possibly have an option at the beginning of the survey to state whether the person completing the survey is the person with chronic urticaria, or if they are completing it on behalf of their child/partner/whatever. We do have a few parents in the group with children with CU, and from time to time get people searching for info on behalf of their partner/relative/friend, etc.

I also wondered if there should be a "don't know" option for the questions, as some of them might not have known answers.

Page 2: Where we ask "Do you live in a new home, etc" perhaps we should ask "Do you live in an old home, etc" too? The house I live in, for instance, was built over 100 years ago, and has extensive work done to it, i.e. damp proof course put in, etc. which involved the use of chemicals.

Page 4: Where we ask "Do you feel you are sick less often, etc" should we have a question "Do you feel that you are sick more often, etc?" also.

Page 8: Where we ask about "Swollen legs or feet", should we also ask about swollen joints? And possibly hands? (The palms of my hands swell if I have been gripping, carrying, etc.)

Page 12: Where we ask about smoking, past smoking, etc. should we also ask "Do you drink alcohol?", perhaps before "Has anyone ever told you to cut down on your drinking?"

On the same page, the question "How many pillows do you sleep on each night?" only allows you to answer yes or no!

Page 14: Where we ask "Have you been given a diagnosis?" should we ask "How long did it take to get this diagnosis?" - I'd like somewhere to vent that in my case it took over 4 months!

Page 15: Where we ask "Have you had a flu shot?" should we ask about other vaccinations too? I wondered also if we should ask about dental work, diagnosed thyroid problems, and other diagnosed health problems.

Page 16: Where we ask about abortions, should we add miscarriages? Technically the same I know.

Also noticed that there is a "blip" with the numbering of questions, which starts up suddenly on page 5 with question 5.

A final comment - personally I would like a BIG space at the end where I could comment on how having chronic urticaria has changed my life in so many dismal ways, i.e. personal relationships/intimacy, friendships, work, wearing clothes, doing things, etc, etc, etc ad nauseum! I felt a little like there was more I wanted to get off my chest to impress on whoever looks at this survey that it affects so many areas of life, including mental health, etc., rather than just the medical/health facts.

Hope this is of interest/help. Best wishes to all, Carol