Barbara Lovrencic: Giving the ITP Patient Voice a Stronger Evidence Base
Barbara Lovrencic, Browser Creator and Developer Assistant, ERP Manager at A.Z. Solutions S.R.L., shared AIPIT‘s post on LinkedIn, adding:
“As patients, we know the real burden of ITP long before it appears in any publication. But it’s when that experience becomes evidence — numbers, patterns, comparisons — that it starts to shape clinical practice, treatment guidelines, and policy.
This study is one more step in that direction: turning what we live every day into something the system can act on.
Proud that members of the International ITP Alliance contributed to this work.”
AIPIT shared a post in LinkedIn about a recent article by Nichola Cooper et al. published in American Journal of Hematology, adding:
“As a patient community, we’ve always known that ITP affects far more than just our platelet counts — it touches our energy, our emotional wellbeing, our relationships, and our daily lives. Now we have data that confirms it.
A new study, ‘Exploring the Burden on Patients Living With and Receiving Treatment for Immune Thrombocytopenia (ITP): Patient and Physician Perceptions From the ITP World Impact Survey (I-WISh) 2.0,’ has been published in the American Journal of Hematology.
The survey included 1,018 patients and 431 physicians across 15 countries — and the results echo what many of us have been saying for years: about a third of patients report that ITP significantly impacts their daily activities and social life, and over half say it takes a real toll on emotional wellbeing.
One finding stood out in particular: nearly half of patients identified fatigue as a common, problematic symptom — but only about a third of physicians recognized it the same way.
This gap between what we experience and what is clinically acknowledged is exactly why patient voices in research matter so much.
Grateful this data now exists in the literature — because we needed the numbers to prove what we’ve always known.”
Title: Exploring the Burden on Patients Living With and Receiving Treatment for Immune Thrombocytopenia (ITP): Patient and Physician Perceptions From the ITP World Impact Survey (I-WISh) 2.0
Authors: Nichola Cooper, James Bussel, Waleed Ghanima, Drew Provan, Yoshiaki Tomiyama, Ming Hou, Donald M. Arnold, Cristina Santoro, Francesco Zaja, Barbara Lovrencic, Mervyn Morgan, Michal Winograd, Jennifer DiRaimo, Danielle Boyle, Olivera Rajkovic-Hooley, Meritxell Vendranas, Susan Frade, Caroline Kruse
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