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Alpha-1 Antitrypsin Deficiency – Lung Experience and Expectations Questionnaire

Year of Birth is 19 _ _:

Your Gender is:

Smoking status:

When did you notice the first symptoms of your disease?
On age:

Who first told you that you could be affected by AATD?

At what age did you get the confirmation that your disease was AATD?
Your age in years

How many doctors did you consult before having a correct diagnosis?

Who follows you regularly for your disease?

Are you under treatment for your disease?

If you answered YES to question 6, do you think that the treatment that you are receiving for your disease is: ( Optional )

How did your disease affect your job/education?

Did you feel discriminated because of your disease

Do you know the name of you lung disease?

Did you have explanations about the way your disease affects your lungs, the risks, what will happen in the future?

If you select YES on the previous question, select one ( Optional )

Did you find the explanations sufficient?

Did you get recommendation to quit smoking? ( Optional )

If you selected yes in the previous quistion, who recommended you to quit? ( Optional )

Did you quit smoking after the diagnosis of AATD? ( Optional )

Did you get recommendations about your diet or eating?

Where you ever asked to participate in a clinical trial to test a new treatment?

Where do you find the latest information about what's going on for your disease? (new treatments, ongoing clinical trials, new research)

What do you think what will happen to your disease in the coming years, with the currently available treatments?

What do you think your general practitioner should know about your disease?

Who do you think should take care of monitoring the progression of your disease?

Who do you think should decide about giving you a new treatment?

Do you think that new effective treatments will be developed in the coming years to cure your disease?

To be able to discuss with you doctor your own idea's about how to manage your disease for you?

I would like my doctor (general practitioner/specialist) to spend more time than he/she usually does on:

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