ISTH 2023 | Life with Glanzmann’s thrombasthenia: the Glanzmann’s 360 study
Glanzmann’s thrombasthenia (GT) is a rare bleeding disorder which is difficult to treat. Kate Khair, PhD, Haemnet, London, UK, shares insights gained from the Glanzmann’s 360 study (ISRCTN 63686338), which aims to understand what life is like for patients with GT using quality of life (QoL) assessments and interviews with patients. Dr Khair highlights the importance of this study in the development of new treatments. This interview took place at the 31st Congress of the International Society on Thrombosis and Haemostasis (ISTH), held in Montréal, Canada.
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Transcript (edited for clarity)
So I’ve recently been doing some research with people with Glanzmann’s thrombasthenia looking at a sort of a holistic view of what it’s like to live with this rare bleeding disorder. And as a clinician I know that that’s a quite difficult condition to live with and it’s a difficult condition to treat. In this study we’ve looked at quality of life using validated tools but have also interviewed people with Glanzmann’s to find out what it’s like to really live with it on a day-by-day basis...
So I’ve recently been doing some research with people with Glanzmann’s thrombasthenia looking at a sort of a holistic view of what it’s like to live with this rare bleeding disorder. And as a clinician I know that that’s a quite difficult condition to live with and it’s a difficult condition to treat. In this study we’ve looked at quality of life using validated tools but have also interviewed people with Glanzmann’s to find out what it’s like to really live with it on a day-by-day basis. And what we’ve found is that they’re having many more bleeds than I had recognized as a clinician. They don’t bother telling us about them because there’s no treatment and so they just live with bleeding at home. And that’s actually really difficult. And it impacts not just on them but also on their family. So new treatments are coming. It’s really important that we understand what it’s like now and what it’s going to be like in the future when we can offer these treatments to them clinically.
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