Thank you for taking the time to fill out this questionnaire about our new Introductory
Pamphlets. We really appreciate your time to help us with this project to improve the quality and usefulness of information available to people with BHD.
Before you begin, I would just like to point out that if you can’t answer a particular question, please don’t worry. It is because the information pamphlet has not been written clearly enough to get the information across, not your fault for not knowing the answer!
1.
Which three parts of the body are affected by BHD?
2.
What causes BHD?
3.
What is the only way to really know if you have BHD?
4.
Where can you get more information about BHD?
1.
What is the skin symptom of BHD and where do they normally develop?
2.
When does this symptom normally appear?
3.
Are they dangerous?
4.
Who should you talk to about treatment?

1.
What are the two lung symptoms of BHD?
2.
How do you know if you have them?
3.
What are the symptoms of a collapsed lung?
4.
Who should you talk to about treatment?
1.
What are the two kidney symptoms of BHD?
2.
How many people with BHD get kidney cancer?
3.
What are the symptoms of kidney cancer?
4.
If you have BHD, how often should you get a kidney scan?
5.
Why should people with BHD not have a whole kidney removed (radical nephrectomy), if they have kidney cancer?

1.
Were the leaflets easy to read?
2.
Was it easy to find the information to answer the questions?
3.
Overall, how did the leaflets look? Do you think they need to be improved, given their purpose? Do you have any suggestions? (Remember, we can’t add pictures or diagrams unless they directly complement the text or add information. Otherwise they could be distracting or confusing.)
4.
If you thought you had BHD, would this be enough information to get you started?
(i.e. asking a doctor the right questions, and knowing where to find more information?)