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Dear Sir or Madam, you ae about to answer the complete Amylife study Please consider taking about 45 minutes to fill this questionnaire.

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1. Medical history

You reply as :

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

How did you find out about your amyloidosis?

Select one answer

At what age did you develop the first symptoms of amyloidosis?

Select one answer

For which symptom(s) did you initially consult your doctor?

Choose all that apply

At the time of your first consultation, would you say that your symptoms were :

Select one answer

At the time of your first consultation, would you say that the symptoms were :

Select one answer

Prior to your diagnosis, had you been admitted to hospital because of symptoms related to your amyloidosis?

Select one answer

Between the first symptoms and the diagnosis, how many doctors did you consult?

Before diagnosis, which health professionals did you consult?

Choose all that apply

1. Medical history

Before diagnosis, what tests were conducted ?

Choose all that apply

Over what period of time were tests conducted?

Select one answer

Which doctor first suspected that you had amyloidosis?

Select one answer

Which doctor first confirmed the diagnosis of amyloidosis?

Choose all that apply

Were you given an information document about amyloidosis at the time of diagnosis?

Select one answer

How long did it take between your first symptoms and the diagnosis?

Select one answer

Did any new symptoms appear between your first consultation and your diagnosis?

Select one answer

Between onset of symptoms and diagnosis have your symptoms change?

Note 0 if your symptoms have not changed, 1 to 5 if they have worsened, -1 to -5 if they have regressed.
0
Regressed
Worsened

1. Medical history

Before diagnosis, had you ever heard of amyloidosis?

Select one answer

How did you feel when you were diagnosed?

Choose all that apply

Where are the medications specific to your amyloidosis administered:

Select one answer

Following your diagnosis, how quickly did you start your treatment ?

Select one answer

What symptoms are you suffering from today?

Select one answer in each row if you suffer from that symptom

How would you rate your current state of physical health?

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

How would you rate your current morale today?

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

2. Medical and social care

At the time of diagnosis, what did your GP know about amyloidosis?

Select one answer

Which doctor mainly prescribes your treatment?

Select one answer

How long does it take you to get to this doctor?

Select one answer

How often are you monitored for amyloidosis treatment?

Select one answer

Which healthcare professionals are currently involved in managing your amyloidosis?

Choose all that apply

2. Medical and social care

How would you rate the information provided to you by healthcare professionals : about your disease?

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

about the evolution of your disease?

about treatments?

on the impact of amyloidosis on daily life?

on social support options?

on the possibility of psychological support?

2. Medical and social care

What other sources of information do you have about the disease and its treatment options?

Choose all that apply

Do you feel you have a good understanding of the disease?

Select one answer

What questions do you have about your amyloidosis?

Choose all that apply

Type of amyloidosis :

Select one answer

2. Medical and social care

What are the specific treatments for your amyloidosis?

This question concerns treatments which treat amyloidosis. This question does not concern treatments of symptoms or other treatments that you can have elsewhere.

Have you ever been on dialysis?

Select one answer

2. Medical and social care

What are the specific treatments for your amyloidosis?

This question concerns treatments which treat amyloidosis. This question does not concern treatments of symptoms or other treatments that you can have elsewhere.

Have you ever been on dialysis?

Select one answer

2. Medical and social care

What are the specific treatments for your amyloidosis?

This question concerns treatments which treat amyloidosis. This question does not concern treatments of symptoms or other treatments that you can have elsewhere.

Have you ever been on dialysis?

Select one answer

2. Medical and social care

What are the specific treatments for your amyloidosis?

This question concerns treatments which treat amyloidosis. This question does not concern treatments of symptoms or other treatments that you can have elsewhere.

Have you ever been on dialysis?

Select one answer

2. Medical and social care

What are the specific treatments for your amyloidosis?

This question concerns treatments which treat amyloidosis. This question does not concern treatments of symptoms or other treatments that you can have elsewhere.

Have you ever been on dialysis?

Select one answer

2. Medical and social care

Have you ever had a transplant?

Choose all that apply

Have you ever been part of a clinical trial ?

Choose all that apply

Have you been admitted to the emergency room in the last year due to your amyloidosis?

Select one answer

Apart from amyloidosis, do you suffer from any other serious illnesses?

Select one answer

In total, how many medications are you taking?

Select one answer

What would you like to see improved in the management of your amyloidosis?

Choose all that apply

What complementary therapies do you use?

Choose all that apply

Overall, how would you rate your medical care?

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

2. Medical and social care

Do you consider that you are well informed about insurance and/or social care?

Select one answer

How would you rate the responsiveness of insurance and/or social organisations?

What would you like to see improved in your social care?

Choose all that apply

Overall, how would you rate your social care?

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

3. Daily impact

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

3. Daily impact

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

3. Daily impact

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

4. Professional and financial impact

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?

Select one answer

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

Select one answer

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

0
Worsened
Improved

4. Professional and financial impact

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?

Select one answer

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?

Select one answer

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

5. Caregivers and social relationships

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?

Choose all that apply

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?

Choose all that apply

Does being a caregiver have an impact on their income?

Select one answer

Does being a caregiver have an impact on their health?

Select one answer

Does being a caregiver have an impact on their morale?

Select one answer

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

Select one answer

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

0
Worsened
Improved

5. Caregivers and social relationships

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

Select one answer

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

Select one answer

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

Select one answer

Why would you avoid talking about your illness?

Choose all that apply

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

Choose all that apply

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?

Select one answer

Gender of the patient

Select one answer

Age of the patient

Select one answer

Country of residence

Select in the list

Annual net household income :

Select one answer

Annual net household income :

Select one answer

Annual net household income :

Select one answer

Annual net household income :

Select one answer

Annual net household income :

Select one answer

Annual net household income :

Select one answer

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?

Select one answer

Annual net household income :

Select one answer

Annual net household income :

Select one answer

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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