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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.

What is your current professional situation?

Select one answer

Have you informed your employer of your medical condition?

Select one answer

Have you adapted or benefited from an adaptation of your workstation?

Select one answer

Have you changed jobs as a result of your illness?

Select one answer

About your changes of activity, would you say :

Select one answer

Without having the financial means to do so, would you have liked to stop working?

Select one answer

Have you suffered discrimination or harassment at work because of your illness?

Select one answer

How many days have you been off work due to amyloidosis in the last 12 months?

Select one answer

What’s your longest period off work since your diagnosis ?

Select one answer

Have you given up any career plans as a result of your condition?

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Have you started any new career plans as a result of your illness?

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

0
Worsened
Improved


Has your income been affected due to professional interruptions (part-time work, sick leave, etc.)?

Select one answer

Do you pay for medical consultations and examinations yourself ?

Choose all that apply

Do you use complementary therapies at your own expense?

Choose all that apply

Do you receive any medical treatment at your own expense?

Select one answer

How much do you spend at you own expense on examinations, consultations and treatments?

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Do you have professional caregivers?

Choose all that apply

What is your annual budget for caregivers in your care?

Select one answer

Have you had any work done to adapt your home or vehicle to your illness?

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How much of your annual income comes from social benefits linked to your amyloidosis?

Select one answer

What budgets have you cut as a result of the cost of your illness?

Choose all that apply

Did you have to dip into family savings to cope with amyloidosis ?

Select one answer

Did you have to take out a loan to cope with amyloidosis ?

Select one answer

Overall, how would you assess the impact of amyloidosis on your financial capacity?

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

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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 receive financial support that helps you access treatment?

Select one answer

Is that financial support for :

Select one or more answers

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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