8 things to discuss with your doctor

You might be someone who is very on top of their hemophilia, who stays informed on the latest developments and has a good working knowledge of what to expect from treatment. But appointments with your healthcare team can often be many months apart, and it can be difficult to remember everything you want to raise with your doctor.

So, to help you aim higher, here is a checklist of 8 important things to discuss at your next appointment.

1. Bleeds

Keep a record of how many bleeds you have had in the past 12 months. This is important information that will help your doctor to understand whether your treatment is optimized for you.

2. Hospitalization

Have you had to go to the hospital because of your hemophilia over the past year? Make sure your doctor is mindful of any hospitalizations when they are evaluating how well your current therapy is working for you.

3. Physical activity

Think about how comfortable you feel participating in physical activities on your current treatment. A helpful way to communicate this to your doctor is by giving your level of comfort a number on a scale from 1 to 5, with 1 being very uncomfortable and 5 being extremely comfortable.

4. Dosing

Are you happy with your current dosing frequency? If not, you could ask your doctor whether you are a candidate for more individualized dosing.

5. Adherence

Do you ever find yourself skipping doses of your current treatment? Think about how often this happens and discuss with your doctor. If you are skipping doses, it may be because your treatment isn’t right for you, and your doctor may be able to suggest a different option.

6. Satisfaction

How satisfied are you with your current treatment? Try putting a number on your current level of satisfaction from 1 to 5, with 1 being not at all satisfied and 5 being completely satisfied. Raise this with your doctor and discuss with them about how you arrived at this number.

7. What I wish I could change

Think about your current treatment and what aspects of this you would most like to change. How would these changes improve your life or make managing your hemophilia easier? Discussing these issues will help your doctor to have a good understanding of your treatment priorities.

8. How can I aim higher?

Having discussed the previous points with your doctor, now is the time to aim higher and ask your doctor: Would I benefit from changing my FVIII therapy?