.

Dear Sir or Madam, please consider taking about 10 minutes to answer this questionnaire.

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Please note that if you are responding as a caregiver, complete this questionnaire with the patient's answers.

Would you say that your amyloidosis is a disability in your daily life ?

Select one answer

Do you find it difficult to walk on a daily basis?

Select one answer

Do you find it difficult to get up or go to bed every day?

Select one answer

Do you have any difficulties with your daily household chores?

Select one answer

Do you find it difficult to go shopping (carrying loads)

Select one answer

Do you find it difficult to drive?

Select one answer

Do you find it difficult to wash, shower or bathe?

Select one answer

Do you find it difficult to use objects like forks, knives, pens(...)?

Select one answer

Do you find it difficult in everyday life to follow a discussion, watch a TV show or concentrate?

Select one answer

Do you find it difficult to look after your children or grandchildren?

Select one answer

Do you find it difficult to urinate?

Select one answer

Do you find it difficult to follow your medical treatment?

Select one answer


What is your family situation?

Select one answer

Has your living environment changed due to your amyloidosis?

Select one answer

Would you say that your illness has :

Select one answer

Has amyloidosis caused you to reduced any family relationships?

Choose all that apply

Has amyloidosis prompted you to start or speed up a family project?

Choose all that apply

Does your illness have an impact on your sexual desire?

Select one answer

Does your illness have an impact on your partner's sexual desire?

Select one answer

Do you feel that your sexual life has changed due to amyloidosis ?

Select one answer

Have you ever discussed the impact of the disease on your sexuality with a health professional?

Select one answer

Would you say that your illness has rather ?

Select one answer

Do you feel that your friends have changed the way they look at you or behave towards you?

Select one answer

Have your social activities changed due to your illness?

Select one answer in each row if applicable

Overall, how would you rate the impact of amyloidosis on your quality of life?

Note 0 if your quality of life has not changed, 1 to 5 if it has improved, -1 to -5 if it has worsened.
0
Worsened
Improved


How did you learn about this study?

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Gender of the patient

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Age of the patient

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Type of amyloidosis :

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Country of residence

Select in the list

Annual net household income :

Select one answer

Annual net household income :

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Annual net household income :

Select one answer

Annual net household income :

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Annual net household income :

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Annual net household income :

Select one answer

Do you live outside a capital city?

Select one answer

Annual net household income :

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Annual net household income :

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Annual net household income :

Select one answer

Annual net household income :

Select one answer
Thank you for your time and your feedback.

As part of the AMYlife study, we value your participation and the insights you've provided. If you feel comfortable and would like to contribute further, we invite you to share more about your journey with amyloidosis. Your story can help raise awareness, foster understanding, and provide support to others facing similar challenges. You can express your wish to be contacted by writing to the following address : amylifestudy@gmail.com


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