CONTENTS:

Each month, PDSA highlights interesting findings and insightful expert commentary to help enhance your understanding of ITP and partner more effectively with your care team. This month, we share the following:


Exploring the Burden on Patients Living With and Receiving Treatment for ITP: Patient and Physician Perceptions From the ITP World Impact Survey (I-WISh) 2.0

survey

The ITP World Impact Survey (I-WISh) 2.0 was a large international survey asking adults with immune thrombocytopenia (ITP) and the doctors who treat them about how ITP affects people’s daily lives and well-being. PDSA staff and several of our medical advisors are authors on the study and many PDSA members and ITP patients contributed their voices to the I-WISh 2.0 survey.

Key Findings for Patients:

  • Many patients feel that ITP significantly affects their day-to-day activities, emotional health, and family/social life.
  • Fatigue (extreme tiredness) was one of the most common and bothersome problems, more often reported by patients than doctors.
  • Almost all patients had received treatment for ITP, most commonly corticosteroids, and many found treatment helpful — but many also felt treatments come with burdens or side effects.
  • A notable number of patients wished they could spend less time on treatment or avoid lifelong treatment entirely.
  • About one-third said they might have chosen a different treatment if given the choice.
  • Most patients and doctors agreed on general treatment goals (like stable blood counts and better quality of life), but patients placed greater importance on reducing fatigue and emotional impact.

What This Means:

Living with ITP affects more than just platelet counts — it can impact energy, emotional well-being, work, and social life. The survey highlights how important it is for patients and doctors to work together to set treatment goals that not only improve medical results but also address daily quality of life.

Your experience matters. Talking openly with your healthcare team about fatigue, emotional health, work challenges, and treatment expectations can lead to better, more personalized care.

PDSA thanks all the patients and doctors who contributed to this survey.

https://onlinelibrary.wiley.com/doi/10.1002/ajh.70379

 


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