Voices in ITP Care: The Power of Shared Decision-Making

For years, Holly had been living with unexplained fatigue but chalked it up to her packed schedule. It wasn’t until she sat in Dr. Michael Tarantino’s office, listening to him describe the many potential symptoms of ITP, that everything clicked.

“When he mentioned fatigue, a lightbulb went off. I realized that I had experienced fatigue, but I was attributing it to having a full life,” she said.

That moment highlights something crucial about ITP: it’s so much more than low platelet counts. While ITP is fundamentally a bleeding disorder, it’s also a systemic condition that affects the whole person in ways that often go unnoticed, including exhaustion, anxiety, cognitive impairment, and other aspects of patients' lives.^2,3

For Holly, her biggest challenge wasn’t managing platelet count—it was guilt. “When my kids ask me to play, I feel guilty that I have to go lay down,” she said. “When I’m working from home and I suddenly need a nap in the middle of my day, that’s a problem.”

Research reveals a striking disconnect: while only 30% of doctors hear about this unexplained fatigue at diagnosis, 58% of patients identify it as their most frequent symptom, with 73% of those patients ranking it among the most severe.³  Dr. Tarantino notes that people living with ITP often become so accustomed to their symptoms that they consider them normal. When asked how they’re feeling, patients may simply say they’re “fine,” not realizing that their fatigue, brain fog, and other challenges could be connected to ITP. This gap between lived experience and what patients communicate during appointments highlights the importance of honest two-way dialogue. Clinicians must ask the right questions and patients must share their symptoms openly to determine how care is addressed in a treatment plan.  

Holly’s advice to other patients is straightforward: “Share every little detail.”

Seemingly small experiences—unpredictable afternoon crashes, brain fog during meetings, anxiety about blood tests—all provide crucial information. ITP symptoms often don’t correlate with platelet levels, meaning doctors need to hear about the day-to-day.

Further, clinical studies show that patients’ priorities may differ from traditional medical focus. While doctors typically concentrate on preventing bleeds, patients often prioritize improving energy levels, reducing anxiety, and participating fully in daily activities.^1,3 Understanding these preferences is essential for developing effective, personalized treatment plans.

Holly began working with her healthcare team using a process called “shared decision-making,” a partnership where doctors bring medical expertise and patients contribute their valuable lived experience. This approach helps patients to understand the risks, benefits, and consequences of different treatment options, empowering them to participate in care decisions. It also supports doctors by encouraging them to consider different patient perspectives and seek out what is most concerning for the person.

This partnership transformed Holly’s care. Instead of focusing solely on platelet numbers, her team could address her biggest concern: having the energy to be present with her family and perform well at work.

“We need to make sure that we’re understanding all of a person’s health and not just their platelet count, so it’s very important to have open dialogues with all the members of the healthcare team,” Dr. Tarantino said.

Research demonstrates that when patients and doctors work as partners, the results are impressive: greater patient satisfaction, improved treatment adherence, and improved outcomes.⁴

Holly continues working collaboratively with her healthcare team, demonstrating that shared decision-making is an ongoing process rather than a one-time conversation. “I do worry about my fluctuating platelet count,” she said, “but I’m also focused on getting more energy back into my day.”

Her experience illustrates that successful ITP management requires both clinical expertise and a patient’s perspective.  Shared decision-making creates a foundation for care that addresses what truly matters most to each patient and their support network.