Information needs and decision making in haemato-oncology
Why did we do the study?
Blood cancers can be treated in different ways. People with more chronic types (e.g., chronic lymphocytic leukaemia and follicular lymphoma) might not need treatment, but may be monitored in the haematology clinic (“watch and wait”) until treatment is needed, if this ever occurs. Others may receive treatment soon after diagnosis. There are difficulties associated with each of these approaches, which can complicate decision making, yet patients told us that there is little information to guide them.
What were the study aims?
- To further understanding the decision-making processes and preferences of patients with chronic blood cancers and their families.
- To identify what information patients want to know, when and in what format and whether these needs have been met.
- To provide data for doctors and nurses, so they have a better understanding of information needs and the desire for shared decision making.
What did we do?
In-depth intervews with patients and relatives to explore experiences of decision-making and information needs. We explored the desire for shared decision making, and the information wanted (e.g., subject, depth, format) and how this varied over time. We also asked people to tell us how treatment effected their quality of life (e.g., day to day activities, side effects, hospital admissions), while taking account of their diagnosis, treatment, and age and sex.
What did we find?
We hope this work will enable patients to make treatment choices that are right for them, supported by their doctors and nurses.