Facilitating informed decision-making in haemato-oncology
Why are we doing this study?
Blood disorders are complicated diseases that can be treated in different ways. People with more chronic disease types (such as chronic lymphocytic leukaemia and follicular lymphoma) might not need treatment, but may be monitored in the haematology clinic (known as “watch and wait”). Some may go on to receive chemotherapy, radiotherapy or stem cell transplant, or others may receive such treatments soon after diagnosis. Each of these approaches can have side effects that may require hospital stays and could affect quality of life. This can make treatment decisions difficult and patients told us that there is little information available to help them with such issues.
What is our aim?
This YHHN study aims to improve understanding about the information needs and decision-making processes of patients with chronic blood cancers and their families. It also seeks to improve the information available, so people affected by these cancers are more able to share in decision-making and make treatment choices that are right for them. Finally, it will provide data for doctors and nurses, so the treatments they offer are based on the best available evidence.
What are we going to do?
Working with patients and relatives, doctors and nurses in the YHHN area, and other researchers, the ECSG team will examine patient experiences of decision-making, including their desire for involvement, their information needs and the strategies they use to process information about their diagnosis and prognosis. At the same time, we will analyse our YHHN data to produce information about the effects of treatment on quality of life (such as day to day activities, side effects and hospital admissions), taking into account disease type, previous chemotherapy and factors such as age and sex. We hope this work will enable patients to make treatment choices that are right for them, supported by their doctors and nurses.