Introducing the ITP Control Tool: A Shared Resource for Patients and Clinicians

ITP is a disease of complex immune system dysregulation in which the immune system mistakenly attacks and destroys platelets, the blood components that play a critical role in clotting. The result is a low platelet count that can lead to bleeding and bruising and potentially life-threatening episodes including intracranial hemorrhage.⁵ 

But beyond bleeding and bruising, there can be fatigue, brain fog, anxiety, and other quality of life challenges that shape how people experience ITP every day. The experience of these symptoms can vary widely from person to person and fluctuate over time, making them easy to dismiss and difficult to track by both patients and clinicians.^3,4 

Managing ITP requires looking beyond the platelet count to understand and address the outcomes that matter most to patients, recognizing that the complex immune dysregulation of ITP can affect patients in ways that may not be fully reflected by platelet counts alone.^3,4  

Unlike platelet counts, which are measurable, trackable, and easy to report, other more variable symptoms can be difficult to measure and capture. ^1,2  

As a result, important elements of disease burden may not always be captured through laboratory measures alone.^1,2 A comprehensive understanding of how patients are feeling and functioning in addition to their platelet counts can help healthcare professionals better assess the overall impact of ITP and support care decisions that optimize patients' outcomes and quality of life.⁶  

Patient-reported outcomes are recognized as a valuable component of disease management; however, their use in routine clinical practice has been limited in ITP.⁶ In ITP, these key dimensions include:^3,4,6 

1. Bleeding and bruising 

2. Brain fog and cognitive effects 

3. Fatigue 

4. Emotional well-being 

5. Day-to-day functioning 

6. Relationships and social life 

7. Care needs and support 

8. Platelet-related concerns 

Looking at patient-reported outcomes can provide a practical framework for having more complete and guided conversations, helping to inform and possibly support shared decision-making between patient and clinician.⁶ 

The availability of standardized, content-valid tools to support clinicians in these conversations has been limited. This new tool was developed to help expand the resources available.  

The ITP Control Tool was built to fill this gap in current standardized care.  

It is the first patient-reported measurement tool specifically designed to evaluate the construct of ITP disease control. Patients can complete this brief, content-valid, and publicly available questionnaire themselves. It was developed collaboratively with patients living with ITP, patient advocacy leaders, clinical experts in ITP and patient-reported outcome experts following the methodology of existing scientific standards for the development of such measures and with the support of Sanofi.^7,8 

The tool consists of eight questions, each addressing a distinct dimension of ITP. Together, they build a multi-dimensional picture of how a patient experiences ITP over time.  

Preparing for a doctor's appointment with ITP can feel overwhelming. Patients often worry they will forget something important, or that what they are experiencing will not come across clearly. Not everything they’ve been experiencing is even still top of mind. The ITP Control Tool can help to address this. It prompts patients to reflect on and capture key aspects of their ITP experience over the past four weeks, helping them self-assess their disease control and prepare for conversations with their clinician. 

"As an ITP [doctor], it's very valuable for me when patients use a tool like this, because it really helps align what's going on with the patient and what I need to spend time on during my visits with the patient." - Dr. Hanny Al-Samkari, The Peggy S. Blitz Endowed Chair in Hematology/Oncology at Massachusetts General Hospital and Associate Professor of Medicine in Hematology at Harvard Medical School, Co-Creator of ITP-CT.  

That alignment can translate to better care in practice, making appointments more productive for clinicians and patients alike.  

The ITP Control Tool was created as a collaborative effort to address the needs of both patients and physicians. The eight dimensions of the ITP Control Tool reflect their words, their priorities, and their experience of living with and treating this disease. 

We invite every clinician working with ITP patients to explore the tool, share it with their patients, and use it to open conversations that go beyond the platelet count. 

Visit www.ITPControl.com to access the tool and learn more. 

Sanofi is committed to making a meaningful impact for the ITP community, not just through science, but through the tools, resources, and support that help clinicians and patients navigate this disease together. 

This site only provides information on the ITP Control Tool (ITP-CT). It is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Sanofi does not provide medical advice or medical service, and patients should always seek the advice of a physician or other qualified healthcare professional with any questions regarding a medical condition.