Imperial College London

APOE4 Survey

The APOE4 gene is one of the biggest risk factors for developing Alzheimer’s disease. We would like your input in developing a counselling tool for people who choose to get tested for this gene.

APOE4 Survey

Step 1 of 13

Consent and risk statement(Required)

We ask for you throughts on:

• Genetic tests for Alzheimer's disease

• The best way to explain these tests

• Treatments that can stop Alzheimer's disease occurring in the first place

• This survey should take 10-15 minutes to complete

Data from this survey will:

• Be entirely anonymous. We won't collect any information which might identify you.

• Be stored securely on University of Cambridge servers. It may be shared with other people who are interested in this research

Please note that the explanations here do not replace seeking medical advice from a qualified professional.

By clicking “I Agree” below, you give informed consent to participate in this survey. You acknowledge that you have read and understood the information provided about the survey's purpose, and the confidentiality of your responses.

Your participation is invaluable - thank you for contributing to this important research!

General information about how the University uses personal data can be found here https://www.information-compliance.admin.cam.ac.uk/data-protection/research-participant-data

This research has received ethical review from the University of Cambridge Human Biology Research Ethics Committee

I Agree

Demographic details

How old are you?(Required)

18-24

25-34

35-44

45-54

55-64

65-74

75-84

85 and over

Are you?(Required)

Female

Male

Another gender

Prefer not to say

Which best describes you?(Required)

I have Alzheimer's disease or other dementias

I am/was a carer for someone with Alzheimer's disease or other dementias

A family member has/had Alzheimer's disease or other dementias

A friend has/had Alzheimer's disease or other dementias

My work is related to Alzheimer's disease or other dementias

None of the above

Choose the country that you live in(Required)

The risk of getting Alzheimer's disease depends on several factors. These include environment, lifestyle, age and genetics. However, people who have a gene called APOE4 are more likely to get the disease.

For now, we have no cure for the disease, but researchers are working hard to find one. We do have treatments that help with symptoms. More importantly, we know how to reduce the risk of developing Alzheimer's.

If offered the choice, how likely would you be to get yourself tested for this gene? (please select one option)(Required)

Very likely	Somewhat likely	Unsure	Somewhat unlikely	Very unlikely

What would motivate you to get tested? (please select all that apply)(Required)

To prepare my family for my possible illness

To prepare my personal and financial affairs

To adjust my life plans accordingly

To know my risk in case better treatments become available

To provide information about risk to my children

To contribute to research

To seek peace of mind if I am at low risk

To confirm the suspicion that I might be developing Alzheimer's disease

To know if I should seek help from healthcare professionals

Curiosity

What concerns would you have with getting tested? (please select all that apply)(Required)

It would upset me if I was at high risk for developing Alzheimer's

The test does not give a definite answer about whether or not I might get Alzheimer's

There is no cure for Alzheimer's

The test result might upset my loved ones

The results could change how healthcare workers treat me

The results could change how friends and family treat me

The results could change how employers treat me

I would worry about my children's risk of getting Alzheimer's

My family does not approve of testing for this

Everyone who gets tested for the APOE4 gene will be offered genetic counselling. This is where a trained healthcare professional explains their test result. Please tell us how important you think it is to discuss the subjects below.

Please rank the following items in order of their importance by clicking and dragging each item up or down.

Top - Most important | Bottom - Least important

Parents who have the APOE4 gene may pass this down to their children. Hence, the adult children of people with the APOE4 gene may also want to receive counselling.

How important is it for these adult children to have the opportunity to get tested and counselled for the APOE4 gene?(Required)

(Please select one)

Very important	Somewhat important	Unsure	Somewhat unimportant	Very unimportant

Please tell us how appropriate you would find the following ways of receiving counselling if you were found to have the APOE4 gene.

(Please select one option for each statement)

A face to face appointment with a healthcare professional(Required)

Very appropriate	Somewhat appropriate	Neutral	Somewhat inappropriate	Very inappropriate

A group appointment (with other family members who have been tested) and a healthcare professional(Required)

Very appropriate	Somewhat appropriate	Neutral	Somewhat inappropriate	Very inappropriate

A video call (e.g. 'Zoom' or Teams) or telephone appointment with a healthcare professional(Required)

Very appropriate	Somewhat appropriate	Neutral	Somewhat inappropriate	Very inappropriate

An information leaflet or video only with no formal counselling appointment(Required)

Very appropriate	Somewhat appropriate	Neutral	Somewhat inappropriate	Very inappropriate

How much time do you think is appropriate for a genetic counselling appointment?(Required)

15 minutes or less	Between 15-30 minutes	Between 30-45 minutes	Between 45-60 minutes	More than an hour

Please tell us how appropriate you would find the following ways of receiving counselling if you were found to not have the APOE4 gene.

(Please select one option for each statement)

A face to face appointment with a healthcare professional(Required)

Very appropriate	Somewhat appropriate	Neutral	Somewhat inappropriate	Very inappropriate

A group appointment (with other family members who have been tested) and a healthcare professional(Required)

Very appropriate	Somewhat appropriate	Neutral	Somewhat inappropriate	Very inappropriate

A video call (e.g. Zoom or Teams) or telephone appointment with a healthcare professional(Required)

Very appropriate	Somewhat appropriate	Neutral	Somewhat inappropriate	Very inappropriate

An information leaflet or video only with no formal counselling appointment(Required)

Very appropriate	Somewhat appropriate	Neutral	Somewhat inappropriate	Very inappropriate

How much time do you think is appropriate for a genetic counselling appointment?(Required)

15 minutes or less	Between 15-30 minutes	Between 30-45 minutes	Between 45-60 minutes	More than an hour

The following are sample statements that may be used to explain the risk of Alzheimer's disease to someone who has the APOE4 gene.

All of these statements convey the same information, but explained in different ways.

Please rank the items in order of ease of understanding by clicking and dragging each item up or down.

Top - Easiest to understand | Bottom - Most difficult to understand

The following infographics explain the risk of Alzheimer's disease for someone who has the APOE4 gene. All of these graphics convey the same information.

How easy is it to understand the information presented in this graph?(Required)

(Please select one)

Very easy	Somewhat easy	Neither easy nor difficult	Somewhat difficult	Very difficult

The following infographics explain the risk of Alzheimer's disease to someone who has the APOE4 gene. All of these graphics convey the same information.

How easy is it to understand the information presented in this graph?(Required)

(Please select one)

Very easy	Somewhat easy	Neither easy nor difficult	Somewhat difficult	Very difficult

The following infographics explain the risk of Alzheimer's disease to someone who has the APOE4 gene. All of these graphics convey the same information.

How easy is it to understand the information presented in this graph?(Required)

(Please select one)

Very easy	Somewhat easy	Neither easy nor difficult	Somewhat difficult	Very difficult

We would like to understand what type of treatments might be acceptable to people who have the APOE4 gene, and whether this might be different depending on whether or not you have symptoms of Alzheimer's disease.

If you were told that you had a 30% chance of developing Alzheimer's disease in your lifetime due to a genetic risk, but did not have symptoms, how likely would it be that you would want to take the following preventative treatments?

(Please select one)(Required)

Very likely	Somewhat likely	Neutral	Somewhat unlikely	Very unlikely

(Please select one)

(Please select one)(Required)

Very likely	Somewhat likely	Neutral	Somewhat unlikely	Very unlikely

(Please select one)

(Please select one)(Required)

Very likely	Somewhat likely	Neutral	Somewhat unlikely	Very unlikely

(Please select one)

(Please select one)(Required)

Very likely	Somewhat likely	Neutral	Somewhat unlikely	Very unlikely

(Please select one)

If you were told that you had a 30% chance of developing Alzheimer's disease in your lifetime due to a genetic risk, and had some mild symptoms (such as problems with memory or understanding), how likely would it be that you would want to take the following preventative treatments?

(Please select one)(Required)

Very likely	Somewhat likely	Neutral	Somewhat unlikely	Very unlikely

(Please select one)

(Please select one)(Required)

Very likely	Somewhat likely	Neutral	Somewhat unlikely	Very unlikely

(Please select one)

(Please select one)(Required)

Very likely	Somewhat likely	Neutral	Somewhat unlikely	Very unlikely

(Please select one)

(Please select one)(Required)

Very likely	Somewhat likely	Neutral	Somewhat unlikely	Very unlikely

(Please select one)

Imperial College London

APOE4 Survey

APOE4 Survey

Demographic details

(Please select one option for each statement)

(Please select one option for each statement)

Please rank the items in order of ease of understanding by clicking and dragging each item up or down.

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