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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.

Do you have caregivers ?

Select one answer

Who are the people you consider to be your caregivers?

Choose all that apply

On a scale of 1 to 10, How does your caregivers understand your illness?

Rate from 1 star for a very bad understanding to 10 stars for an excellent understanding

Which of these tasks does your caregiver help you with?

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How much time does your caregiver spend assisting you?

Select one answer

Has your caregiver had to adapt their professional activity?

Select one answer

Has your caregiver given up any social activities to help you?

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Does being a caregiver have an impact on their income?

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Does being a caregiver have an impact on their health?

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Does being a caregiver have an impact on their morale?

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Does your caregiver receive support from other relatives to cope with the situation?

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

0
Worsened
Improved


To what extent do you talk about your condition within the family?

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To what extent do you talk about your condition with friends?

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To what extent do you talk about your condition at work?

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Why would you avoid talking about your illness?

Choose all that apply

Would you say that the questions you are asked mainly concern?

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On a scale of 1 to 10, how do your family understand you?

Rate from 1 star for a very bad understanding to 10 stars for an excellent understanding

On a scale of 1 to 10, how do your friends understand you?

On a scale of 1 to 10, how do people around you at work understand you?

20. On a scale of 1 to 10, how do the medical profession understand you?

How are you feeling?

Choose all that apply


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

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Annual net household income :

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Annual net household income :

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Annual net household income :

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Annual net household income :

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Annual net household income :

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Annual net household income :

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Do you live outside a capital city?

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Annual net household income :

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Annual net household income :

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Annual net household income :

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Annual net household income :

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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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