The advance disease and end of life care workstream aims to improve the quality and increase the quantity of multidisciplinary research into outcomes for people at advanced stage of disease with a focus on terminal disease and appropriate treatment and care.
- Use expertise and knowledge to support other researchers across the NCRI and beyond.
- Work with industry to get QoL measures included in trial design. ADEL will be particularly interested in biomarker studies that further support the evidence for discontinuation of treatment.
- Develop proposals for QOL/patient experiences sub-studies in clinical RCTs testing new treatments in advanced disease
- ADEL will focus on the 2nd highest research priority from the 2019 JLA PSP for LWBC – How can patients and carers be appropriately informed of cancer diagnosis, treatment, prognosis, long-term side-effects, and late effects of treatments, and how does this affect their treatment choices? This will include treatment decisions during transitions of care in advanced cancer. Will integrate PPI in all group studies and activities, and to measure and report its impact.