Patient experience of blood cancers

With diverse causes, treatments and outcomes, there are many different types of haematological malignancy.

In ECSG, data on the experiences of individuals with blood cancer is collected from patients themselves, and sometimes family members, as well as NHS specialist staff. We collect it via in-depth interviews and focus group discussions, or by using surveys. Our research is dynamic, and is led by difficulties which have been identified by patients and policy makers, as well as researchers.

Main projects

Treatment decision making (TDM)

We wanted to explore how treatment decision making was happening with a group of patients with chronic blood cancers. These cancers are complex, some requiring intermittent treatment over many years. Little is known about the views of these patients regarding the decision-making processes for their treatment.

Understanding, uncertainty & impact in chronic blood cancers

Chronic blood cancers can be very different to ‘standard’ cancers and this can cause problems for patients as they negotiate their treatment pathway. Our research asked people how they understood what was happening to them, including how Health Care Professionals (HCPs) explained and helped them to understand their condition.

Patient experiences of chronic myeloid leukaemia

Although chronic myeloid leukaemia (CML) can be successfully treated with Tyrosine Kinase Inhibitors (TKI), this treatment can have an impact on quality of life. Consequently, understanding the experiences of people living with CML, including how they manage their medication and cope with side-effects, has gained in importance.

'Unpacking' pathways to lymphoma and myeloma diagnosis

We explored the alignment of experiences before a lymphoma or myeloma diagnosis, with the appraisal, help seeking and diagnostic intervals described in the Model of Pathways to Treatment (MPT) framework. What happens when symptoms are not distinct and diagnosis is not straight forward?