Perception vs Reality
Patient Tools
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perception_vs_reality

Perception
vs Reality

Perception vs Reality image
Patient portrayal.

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.



Perception:
ITP is a curable condition.
Reality:
Approximately 2 of 10 people receiving corticosteroids see their platelet counts rise and stay at that level after treatment. For others, the effect is not lasting so they need to move to another class of drugs such as TPO-RAs or a monoclonal antibody. Both have been proven to boost platelets, although not everyone responds to either treatment. Many people taking TPO-RAs reached target levels in a few weeks, and some maintained that increase for several years. Some people taking a monoclonal antibody have also seen a durable response.
Perception:
Platelet count is the most important goal of any treatment.
Reality:
Platelet counts are only part of the story. The International Consensus Report (ICR) and the American Society of Hematology (ASH) both say that improving your daily life should also be a key goal of treatment. Reducing the risk of bleeding and side effects and controlling the symptoms of ITP are just as important.
Perception:
If corticosteroids have been working for me, I can probably rely on them if my platelet levels drop again.
Reality:
Although up to 9 of 10 people with ITP see a rise in platelet counts after an initial dose of corticosteroids, only about 2 of 10 are able to maintain that platelet rise in the long term. If your platelet levels drop when your doctor stops treatment with corticosteroids, you may want to explore other treatment options for your ITP. Ask your doctor what other options are available to help meet your treatment goals.
Perception:
You just have to accept that harsh side effects are a part of ITP treatment.
Reality:
Not all ITP treatments have side effects that will impact your life in the same ways. Talk to your doctor about options that may be right for you.
Perception:
ITP treatments weaken the immune system.
Reality:
This is not true for all ITP treatments. Corticosteroids and monoclonal antibodies are 2 treatments that work by suppressing your immune system. Other treatments, such as TPO-RAs, can raise platelet counts for sustained periods without weakening your immune system.
Perception:
Doesn’t my doctor already know how ITP affects my day-to-day life?
Reality:
Not necessarily. According to the I-WISh survey, 4 of 10 doctors who treat ITP think their patients are uncomfortable speaking up about their condition. This means that there are a lot of people who don’t tell their doctor how treatment affects their daily lives. Are you one of them? If your doctor doesn’t know, how can they help you choose the treatment that works for your lifestyle?

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.

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Patient Tools

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:

Icon for the Interactive Treatment Discussion Tool Interactive Treatment Discussion Tool

Icon for the ITP Quality of Life Quiz ITP Quality of Life Quiz

Icon for the ITP Life Log printable tool ITP Life Log


Understand the Treatments Available to You

Understand the Treatments Available to You image

From the I-WISh Survey:

Do doctors keep patients informed of new treatment options? Yes or No?

Doctors: Yes

9 of 10

Patients: Yes

4 of 10

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!

Icon for the Interactive Treatment Discussion Tool for printing 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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From the I-WISh Survey:

Do doctors understand how much ITP affects their patients’ lives? Yes or No?

Doctors: Yes

9 of 10

Patients: Yes

7 of 10

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.

Icon for the ITP Quality of Life Quiz for printing 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.

Icon for the ITP Quality of Life Quiz In case you prefer to use the interactive version, click here: ITP Quality of Life Quiz



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Track Your Quality of Life With the ITP Life Log

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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!

Icon for the ITP Life Log printable tool 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.



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Support Resources

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.

Here are some good resources to get you started:

Global ITP Alliance logo

Global ITP Alliance

Global ITP Alliance Member Countries:

United Kingdom ITP Support Association logo

United Kingdom

Italy ITP Support Association logo

Italy

The organizations and websites listed above are external to Novartis. Novartis does not have control over the information provided on these websites and, therefore, cannot guarantee their accuracy and completeness. Any information you receive from these sites should not replace the medical advice from your health care provider.