Researchers surveyed 221 people with a rare blood condition called immune thrombocytopenia (ITP) to understand how their disease and medications affect their everyday activities. They found that most people struggled with travel, exercise, and sleep because of their condition. While some medications helped improve these problems, others made them worse—especially when the medications had strict food rules. The study shows that doctors and patients need to work together to find treatments that don’t make daily life harder.

The Quick Take

  • What they studied: How a blood disorder called ITP and its medications affect people’s ability to do everyday activities like traveling, exercising, eating, and sleeping, plus their mental health.
  • Who participated: 221 adults from multiple countries who had been diagnosed with ITP and were taking one of three specific medications for at least 3 months. They filled out an online survey between September 2023 and April 2024.
  • Key finding: 89% of people said ITP made at least one part of their daily life harder, with travel being the most common problem (69% of people). About one-third felt better after starting treatment, but some medications actually made certain activities worse.
  • What it means for you: If you have ITP, you’re not alone in struggling with daily activities—most people do. Some medications help more than others, and it’s worth talking to your doctor about which medication might work best for your lifestyle, especially if you have concerns about food restrictions or side effects.

The Research Details

This was a cross-sectional survey, which means researchers asked people questions at one point in time rather than following them over months or years. The survey was conducted online and was voluntary—people with ITP from patient organizations could choose to participate. Respondents had to be at least 18 years old, have been diagnosed with primary chronic ITP (the most common type), and have been taking one of three specific medications for at least 3 months.

The researchers asked detailed questions about how well people understood their medication instructions, whether they followed those instructions, and how their condition and treatment affected their daily life. They looked at specific activities like traveling, exercising, eating, sleeping, and working, as well as mental health impacts like anxiety or depression.

This type of study is useful for understanding real-world experiences because it captures what people actually experience in their daily lives, not just what happens in a controlled medical setting.

Understanding how a disease and its treatment affect people’s real lives is just as important as understanding whether the medicine works. This information helps doctors choose treatments that not only control the disease but also fit into patients’ lifestyles. It also helps patients know what to expect and prepare for challenges.

This study has some strengths: it included people from multiple countries, giving a broader perspective, and it asked detailed questions about real-world experiences. However, there are some limitations to keep in mind: people who volunteered to participate may have had stronger feelings about their experience (either positive or negative) than people who didn’t respond, and the study didn’t include a comparison group of people without ITP to see how much of the impact comes from the disease versus the medication.

What the Results Show

The most striking finding was that 89% of people with ITP reported that their condition negatively affected at least one area of their daily life or their mental health. The most common impact was on travel for pleasure—69% of people said ITP made it harder to travel. Other common impacts included problems with exercise, sleep, eating habits, and mental health.

When people started taking their medication, about one-third (36%) experienced improvement in at least one area of their life. However, the picture was mixed: some medications helped more than others. Avatrombopag and eltrombopag showed the highest rates of improvement across different activities and mental health.

One medication, eltrombopag, came with many food-related instructions—72% of people taking it were told when to take it relative to meals, and 69% were told to avoid certain foods. Despite these detailed instructions, 32% of people taking eltrombopag didn’t follow the food rules and ate what they wanted when they wanted. Even more striking, 64% of people taking this medication said they would prefer a medication with no food restrictions.

Interestingly, while some medications helped people feel better, others actually made certain activities worse. Eating habits, sleep, exercise, and mental health were most likely to worsen with treatment, suggesting that the medications themselves can have side effects that affect daily life.

The study found that different medications had different impacts. Eltrombopag came with the most instructions (58% of people taking it received 5 or more specific instructions), while avatrombopag and romiplostim had fewer instructions. The most common instruction across all medications was to take the medicine at the same time each day or week. People taking eltrombopag faced the most dietary restrictions, which created a challenge: they were given detailed food rules but many didn’t follow them, suggesting the rules were difficult to maintain in real life.

This study adds to existing research by showing that while these medications can help control the blood disorder, they may come with trade-offs in terms of quality of life. Previous research has focused mainly on whether these medications work to increase blood cell counts, but this study highlights that patients care about more than just the numbers—they care about being able to travel, exercise, eat normally, and feel mentally healthy.

The study relied on people who volunteered to participate, which means people with very strong opinions (either very satisfied or very dissatisfied) may have been more likely to respond. The study didn’t include a control group of people without ITP, so we can’t be completely sure how much of the impact comes from the disease itself versus the medication. Additionally, the study was based on people’s memories and self-reports rather than objective measurements, which can sometimes be less accurate. The study also didn’t explore why people didn’t follow their medication instructions, which would have been helpful information.

The Bottom Line

If you have ITP: (1) Work closely with your doctor to find a medication that controls your condition while fitting your lifestyle—different medications have different requirements and side effects. (2) Be honest with your doctor if you’re having trouble following medication instructions, especially food restrictions, so you can find solutions together. (3) Expect that ITP may affect your daily activities, but know that treatment can help—about one-third of people in this study felt better after starting medication. (4) Monitor how your specific medication affects your sleep, mood, exercise ability, and eating habits, and report these changes to your doctor. Confidence level: Moderate—this is based on real-world experiences but from a single survey.

This research is most relevant for people with ITP who are considering or currently taking these medications, their family members, and their doctors. It’s particularly important for people who value being able to travel, exercise regularly, or maintain normal eating habits without restrictions. If you have ITP and are struggling with daily activities or side effects, this research validates that your concerns are common and worth discussing with your healthcare team.

Based on this study, some people noticed improvements in their daily activities within the first few months of treatment, while others experienced worsening of certain activities. It’s reasonable to expect that you might notice changes (positive or negative) within the first 3-6 months of starting a new medication. However, individual experiences vary widely, so it’s important to track your own experience and discuss it with your doctor.

Want to Apply This Research?

  • Track three specific areas daily: (1) Medication adherence—did you take your medication at the correct time with the correct food restrictions? (2) Activity level—were you able to exercise, travel, or do activities you enjoy? (3) Sleep quality—rate your sleep from 1-10. This gives you concrete data to discuss with your doctor about whether your current medication is working for your lifestyle.
  • Use the app to set reminders for medication at the same time each day, and if your medication has food restrictions, set reminders for meal timing. Create a ‘medication diary’ where you note any side effects or changes in your daily activities. This helps you remember details to discuss with your doctor and shows patterns you might not notice otherwise.
  • Every two weeks, review your tracking data and note any patterns. Are certain activities getting easier or harder? Is your sleep improving or worsening? Share this data with your doctor at your next appointment. If you notice significant negative changes in multiple areas (sleep, mood, exercise ability), this is important information that might mean your medication needs adjustment. Consider setting a monthly check-in reminder to assess overall quality of life, not just medication adherence.

This research describes real-world experiences of people with ITP taking specific medications, but individual experiences vary widely. This information is educational and should not replace medical advice from your doctor. If you have ITP or are considering these medications, discuss the findings with your healthcare provider to determine what’s best for your specific situation. Do not start, stop, or change any medication without consulting your doctor. If you experience severe side effects or worsening symptoms, seek immediate medical attention.