AS AN adviser to the ITP Support Association for many years, I recognised Gregor Jackson's story as typical of ITP.
First, ITP is uncommon and often not initially recognised. Second, far too often the side- effects of treatment become worse that the bleeding symptoms of the disease. Gregor's initial treatment with steroids was appropriate, because he had heavy n
osebleeds and internal bleeding. But then when his platelet counts were in a safe range, the best management is what his doctor recommended – just be careful.
The goal of management is a safe platelet count, not a normal platelet count.
At the ITP Support Association's annual convention in Edinburgh this week, we will be discussing these issues and interpreting new research.
New treatments have been developed for ITP that focus on increasing the body's production of platelets rather than suppressing the immune system. Their disadvantage is that they need to be taken for ever. They will not change the management of patients such as Gregor, but they offer effective treatment for the few patients with severely low platelet counts and bleeding after failure of splenectomy and other treatments.
But new research is also about educating doctors about proper management of ITP.
My student Jacqueline Guidry, who will be presenting her research to the ITP convention, recovered from ITP several years ago following splenectomy and is now beginning medical school.
She will report the results of a survey of haematologists and patients with ITP.
Her experience with ITP had suggested that patients suffered more from steroid treatment than their doctors appreciated, and that haematologists were more worried about risk for bleeding than their patients – a reason why doctors may persist with steroid treatment.
Her survey supported her experience.
The result of her research will be to implement new tools to improve communication between ITP patients and their doctors. It sounds simple, doesn't it?
The goal of the ITP convention is education. The goal of this educational effort is simply to improve the life of patients with ITP.
• James N George is George Lynn Cross Professor at the departments of medicine, biostatistics and epidemiology at the University of Oklahoma Health Sciences Centre in the United States.
