The correlation between fatigue and quality of life has been confirmed by some of the leading ITP expert clinicians, PDSA, and other ITP patient advocacy organizations from Italy, the U.K., and France. In an abstract presented at the European Hematology Association annual congress, results from the ITP World Impact Survey (I-WISH) showed that two-thirds of patients reported their current health state as greater than 5 on a 7-point insert scale, with 11% reporting that their current health state was less than a 3 on the same scale. The most frequently reported symptoms at diagnosis were bruising, fatigue, and petechiae; whereas, fatigue and bruising became the main complaint of ITP patients at the time of survey completion, a year or more after initial diagnosis. Almost half of patients shared that ITP impacts their energy levels more than half the time, and over a third stated that ITP had a high impact on their emotional well-being. Another key finding uncovered that over half of patients who completed the survey shared a main treatment goal of increasing their energy levels, noting that patients are primarily concerned about ITP’s impact on their quality of life. Further research on this project will be presented at the American Society of Hematology annual meeting in December.
Comment from PDSA: Thank you to the more than 500 PDSA members who participated in the ITP World Impact Survey.
Cooper N. et. al. “The Burden of Disease and Impact of Immune Thrombocytopenia on Patient Quality of Life and Productivity: Results from the ITP World Impact Survey (I-WISH) European Hematology Association. 2018. https://bit.ly/2LClq6c
The TPO agents, N-plate® (romiplostim) and Promacta®/Revolade® (eltrombopag), were approved ten years ago. Since then, research has demonstrated their safety and efficacy of use for extended periods of time. Newer research focuses on how do we define when a TPO works, and when should physicians taper or stop treatment? A team of UK ITP experts convened to create a consensus on this issue. The panel agreed that discontinuation of TPO should be attempted if a patient is feeling well and has improved clinically over the course of treatment. Platelet counts should be consistently over >50,000/µL without hospitalization for at least 6-12 months. This report provides clear parameters for discontinuation of treatment, providing a new option for stabilization of platelet counts without toxicity from extended treatment.
Bradbury, C. “Defining Treatment Success in Patients with Immune Thrombocytopenia Receiving Thrombopoietin Receptor Agonist Therapy: Results from a Modified Delphi Consensus Panel” European Hematology Association. 2018. https://bit.ly/2mL8Ljn