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Funding secured for study to improve information for patients with chronic blood cancers

Posted on 22 July 2016

A team of researchers from the Department of Health Sciences has been awarded funding for a three year study to develop improved information resources to help patients and doctors make decisions about the management of chronic blood cancers (including chronic lymphocytic leukaemia, follicular lymphoma and myeloma).

Chronic blood cancers are complicated diseases that cannot be cured, but can be managed by active monitoring (known as ‘watch and wait’), chemotherapy, or stem cell transplant. Scientific advances mean that increasing amounts of information about the risks and benefits of treatments is becoming available, including whether and when treatment is likely to be needed and how it might affect quality of life, as well as the duration of survival. 

The study, which will be conducted by the Epidemiology and Cancer Statistics Group (ECSG), aims to develop appropriate resources (paper and electronic) to communicate this information to clinical staff, as well as patients and relatives at a time when they feel ready to discuss such issues. These resources will promote shared decision-making, ensuring that treatment choices are aligned with the preferences of patients and their families.

The work, which is funded by a National Institute for Health Research (NIHR) programme grant for applied research, will involve the study team working closely with patients with these cancers, as well as their families and doctors and nurses, to explore their information needs and preferences.  The resources developed will be evidence-based and targeted, taking into account the type of disease, how far it has progressed, treatment already received, and the patient’s general health.  The economic costs of different treatment decisions will also be taken into consideration.

The research will build on an existing patient cohort, the Haematological Malignancy Research Network ( which registers and monitors all patients with blood cancers diagnosed in Yorkshire and Humberside. The findings from the study will be used to inform practice nationwide.