Beyond Platelet Counts: What Survey Data Reveals about Real ITP Patient Needs and Success

Key Takeaways

• ITP is a rare platelet disorder that can cause bruising, bleeding, fatigue, and emotional burdens and can affect people of all ages^1-3
• Platelet counts are important, but they do not fully tell the whole story of successful management² 
• For many patients, successful management also includes reduced fatigue, fewer symptoms, greater stability, and improved quality of life²
• Treatment can bring its own physical, emotional, and practical challenges² 
• Shared decision-making can help align treatment goals with what matters most to patients 

For people living with immune thrombocytopenia (ITP), a rare blood disorder, a lab report only tells part of the story. Platelet counts can rise and fall, but the day-to-day experience of living with ITP is measured in something far more personal: the overwhelming fatigue that makes getting out of bed a challenge, the unsettling appearance of bruises without cause, the workdays and family moments lost to unpredictable symptoms, and the uneasiness of never knowing when the next flare might strike.

Though there are limited published findings on patient and physician perceptions related to symptom and treatment-related burdens, ITP World Impact Survey (I-WISh) data was recently published in the American Journal of Hematology to better understand what patients truly need. These perspectives are calling for a broader definition of successful management, one that reflects real life, not just lab results.²

What Is Immune Thrombocytopenia, or ITP?

Immune thrombocytopenia is a platelet disorder where the immune system mistakenly attacks and destroys platelets, the blood cells responsible for clotting. People living with ITP may also make fewer platelets.¹ For some patients, much of the anxiety stems from the unpredictability of the disease itself: platelet counts may drop to low levels, heightening the risk of bleeding, bruising, and fatigue, and sometimes demanding emergency intervention.³

ITP can occur at any age, but it often affects people aged approximately 30 to 60 years old, with women being affected more often than men.⁴ 

In the international I-WISh 2.0 survey of 1000+ patients and 400+ physicians, one third of patients reported ITP had a high impact on daily activities like errands, chores, work commitments, and family/social life, and 54% reported it had a high impact on emotional wellbeing.²

Although ITP is often diagnosed from lab results examining platelet counts, the lived experience is defined by uncertainty. The spectrum of symptoms can appear without warning, and treatments can bring their own challenges.³ Planning for the future, whether that means a career move, a vacation, or starting a family, can feel complicated for many people living with this disease.

What Are the Biggest Challenges of Living With ITP?

Living with ITP comes with uncertainty. Key challenges can include:

• Unpredictable disease course: ITP flares can happen without warning, making it difficult to plan work, travel, or family events³
• Future planning: Long-term decisions, from career to family, are complicated by the unknowns of ITP²
• Reliance on labs and medical appointments: Frequent monitoring can feel like a tether, adding emotional strain^2,5,6
• Emotional wellbeing: Anxiety, depression, and isolation can occur and are often under-addressed^2,5

What Does Successful Management Look Like for People Living With ITP?

For people living with ITP, success is not defined by platelet counts alone. While reaching a safer or more stable platelet level is an important goal, many people with ITP measure progress by how well they can live day by day. Their treatment goals often include more consistent routines and predictable weeks, more manageable symptoms and energy, the ability to plan ahead, and fewer lab tests and doctor visits.

In the I-WISh 2.0 survey, which surveyed more than 1,000 patients and 400 physicians across 15 countries, patients expressed wanting to experience fewer symptoms, less fatigue, and the freedom to function normally in their daily lives. Even when platelet counts improve, ongoing treatment can come with its own challenges, including short- and long-term side effects, emotional impact, frequent dosing, and disruption to daily life. Less than half of patients felt their fatigue had improved since starting treatment, while 59% said that starting treatment had a high impact on their emotional wellbeing.² 

Since ITP is complex and unpredictable, some patients may not respond to their first treatment or may need to try more than one approach over time.⁶ For patients whose condition remains stable over time, treatment conversations may include whether their treatment plan can be adjusted, reduced, or paused under the guidance of a physician. This is why decisions often involve balancing platelet response with how a person actually feels and functions.²

Why Is Fatigue Such a Critical, and Under-Recognized, Concern in ITP?

Fatigue in ITP is not simply feeling tired. Your body can feel like it’s trying to move through daily life on a battery that drains faster than expected and takes longer to recharge, affecting concentration, mood, relationships, work, and family responsibilities. When this type of intense fatigue is overlooked in a conversation with a physician, patients may feel unheard and their quality of life may suffer as a result.

While patients consistently identify fatigue as a disruptive symptom of ITP and one they want resolved, physicians tend to under-recognize its impact compared with patients themselves.²

Better recognition of fatigue as a core concern, and more open conversations about it during appointments could meaningfully improve care and satisfaction with treatment.

Why Does Shared Decision-Making Matter So Much in ITP?

The conversation is shifting from simply managing ITP over the long term to thinking more ambitiously about what successful management looks like for people living with the condition. For many patients, this means having greater control over their symptoms while minimizing the disruption that ITP and its treatment can bring to everyday life.²

The I-WISh 2.0 findings show that patients and physicians need to work closely together to make treatment decisions.² When patients and physicians define what success looks like and align treatment goals with patient expectations, treatment plans can better reflect the outcomes that matter most, including stable platelet counts as well as reduced fatigue, improved quality of life, and the ability to live with confidence.

Shared decision-making also helps ensure that patients understand their options, including the trade-offs of different treatment approaches, and feel empowered to speak up about symptoms like fatigue that may otherwise go unaddressed. 

Support outside the clinical setting can also play an important role in shared decision-making. Patient organizations, such as the Platelet Disorder Support Association (PDSA) and the National Organization for Rare Disorders (NORD), offer educational resources, symptom-tracking tools, support opportunities, and ways to connect with others who understand life with a rare disease. For patients and caregivers, these communities can help reduce feelings of isolation, encourage more informed conversations with healthcare teams, and provide everyday support for navigating daily life with ITP.

Novartis Commitment to the ITP Community

Building on a more than 25-year history of advancing science and supporting people living with hematological conditions, including ITP, Novartis remains dedicated to driving progress for this community. That commitment extends beyond research to include ongoing collaboration with advocacy groups, clinicians, and the broader ITP community to better understand the needs, priorities, and lived experiences of those affected by this disease. By listening closely and partnering meaningfully, Novartis aims to help drive care forward in ways that reflect what patients truly value: less burden, more stability, and the ability to live life fully.