Understanding the Patient Burden: Insights from Social Media Listening on ITP Treatments

Patient voices provide valuable insights into the real-world impact of ITP treatments.

Analysing Patient Conversations to Identify Unmet Needs

At the European Hematology Association (EHA) Annual Meeting in Madrid in June 2024, our poster, Treatments for Immune Thrombocytopenia (ITP) Place a Burden on Patients and Impact Quality of Life (QoL): Insights from a Social Media Listening Exercise, shed light on the real-world impact of ITP treatments from a patient perspective.

Social media has become a powerful tool for patients to share their experiences and challenges. Using the social media listening platform Sprinklr, we analysed 16,610 online conversations between March 2021 and February 2023 from the USA, UK, Germany, Australia, and Japan. After excluding vaccine-related discussions, we identified 1,085 relevant posts, with 90% coming directly from patients.

The findings highlighted that treatment experiences dominate patient discussions. While some expressed positive sentiments about efficacy and tolerability, a significant proportion voiced concerns about side effects—especially from steroids—loss of efficacy over time, and a lack of curative options. Many patients with chronic ITP, particularly those who had undergone multiple lines of treatment, expressed frustration over the unpredictable nature of their condition and the absence of long-term solutions.

Beyond the physical burden of ITP, the study revealed emotional distress, including anxiety, frustration, and loss of hope. Many patients felt their voices were not always heard by healthcare professionals, particularly when it came to side effects and quality of life considerations.

These insights reinforce the urgent need for more patient-centred treatment approaches. As the ITP community continues to push for better therapies, listening to patient experiences remains critical in shaping the future of care.

Review the poster HERE.

Learn more about I-WISh 1.0 and the first research into the impacts of Quality of Life on people living with ITP HERE.