Your first experiences after being diagnosed with a hereditary brain aneurysm Survey

Welcome to this survey by Hereditary Brain Aneurysm Support

Welcome! We're HBA Support, the UK's first patient-centred charity supporting people affected by hereditary brain aneurysms. We're creating a first-of-its-kind guide, shaped by real experiences, for people newly diagnosed with hereditary brain aneurysms.

Your responses will help create a patient guide which will be made available to patients in the NHS. The guide will include the information for those at the beginning of their journey.

This survey has 10 questions and should take about 5 minutes to complete.

It’s important that only people who have been diagnosed with a hereditary brain aneurysm complete this survey. If that’s not you, then you might want to check out this page with other ways to be involved.

1.When you realised you may be at risk of a brain aneurysm, how easy was it to access screening ? (If you found out ‘accidentally’ then please move on to question 4)

2.What type of support was the most valuable during your journey to a diagnosis? (Select all that apply)

Healthcare team, e.g. nurse, specialist

Family support

Genetic counselling

Patient support groups and/or Facebook Groups

Someone in real life who had gone through it

Online communities, like Facebook Groups

Written information from medical websites or charities

Charities like HBA Support

Other (please specify)

3.When deciding whether to go ahead with screening via a CT or MRI, what influenced your decision the most? What was the most important to you? (Select up to 3)

Understanding how I will get screened and how I will get the results

Having time to decide

Doctor's recommendation

Family history

Speaking with others who had similar experiences

Understanding risks/benefits of screening and possible treatment options

Other (please specify)

4.When you first got your diagnosis, which topics did you most urgently want information about? (Select up to 3)

Other (please specify)

5.What information do you wish your healthcare or specialist team had provided you with but didn't, when you were first diagnosed or considering screening?

6.Which activities caused you the most concern after diagnosis? (Select all that apply)

Other (please specify)

I did not have any concerns after diagnosis

7.Which lifestyle changes have you found most helpful? (Select up to 3)

Other (please specify)

None of the above

8.What challenges did you face when discussing brain aneurysms with your family? (Select up to 3)

Explaining the genetic implications

Encouraging family members to get screened

Managing family members' fears

Talking to children about it

Starting the conversation

I didn't have any challenges

Other (please specify)

I did not discuss it with my family

9.What do you wish healthcare professionals would be more aware of when caring for people with hereditary brain aneurysms?

10.What is your top piece of advice for someone newly diagnosed?

11.OPTIONAL: If there's anything else you would like to add about your experience which you think could help others, please feel free to share here.

Thank you.

Your insights will help shape a guide that could make a real difference to people just beginning their brain aneurysm journey.

If you'd like to receive updates about the guide when it's published, please sign up to our newsletter here: hbasupport.org/newsletter-signup We will not share your address with anyone else.

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