ITP can be confusing. What’s true and what’s not?
There are a number of misperceptions around ITP and its treatment options. These misperceptions aren’t universally true to everyone’s experience, but it’s important to be aware of them and have the most up-to-date information.
If you’ve already tried other treatments without much success, the ASH and ICR guidelines recommend that the selection of your next treatment should be based on shared decision making with your doctor. This means that the experiences and activities you cherish in your day-to-day life may not need to stop once treatment starts. There are treatments that can help manage your ITP without controlling your life. Have a discussion with your doctor.
Get Involved in Your Treatment Decisions
For patients with immune thrombocytopenia (ITP), it’s so important to make sure you are on a treatment path that stabilizes your platelet levels and optimizes your quality of life. The best way to do this is to start that conversation with your doctor.
The following tools can help you prepare for a confident and productive conversation with your doctor:
Understand the Treatments Available to You
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According to the I-WISh survey, 9 of 10 doctors thought they were adequately informing their patients about new treatment options that were available. Four of 10 patients strongly agreed.
Take this information to your next appointment to discuss what is important to you!
Use the Treatment Discussion Tool to help start a conversation with your doctor about your preferences when it comes to ITP treatments.
Show Your Doctor How ITP Affects You Every Day
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According to the I-WISh survey, 9 of 10 doctors thought they adequately understood how ITP affects their patients’ lives. Seven of 10 patients agreed.
The ITP Quality of Life Quiz is a 4-question assessment tool designed to help give your doctor a better understanding of how ITP affects your everyday life. Based on your responses, you and your doctor can have an informed discussion on which treatment is appropriate for you.
Print the ITP Quality of Life Quiz, fill it out, and bring it to your next appointment to help start a conversation with your doctor about optimizing your quality of life throughout your treatment journey.
In case you prefer to use the interactive version, click here: ITP Quality of Life Quiz
Track Your Quality of Life With the ITP Life Log
Your ITP treatment should help you feel well enough to accomplish goals in your life, so it’s important to keep an eye on how you’re feeling. If you notice yourself saying, “I wish I could...” more often than you like, it’s important to let your doctor know.
Use this tool to keep track of your condition and show your doctor how much ITP impacts your day-to-day life, then start a conversation about what you want. Together, you can find a plan that helps you get there!
Print out the ITP Life Log, fill it out, and bring it to your next appointment to help start a conversation with your doctor about your quality of life throughout your treatment journey.
Get the Support You Need
Trying to navigate your way through ITP can be overwhelming, but there are resources out there to find answers to your questions and share experiences with people going through the same things you are.