Research priorities for people living with and beyond cancer have been set following a two-year project by the National Cancer Research Institute (NCRI), who partnered with the James Lind Alliance on a priority setting partnership.
The project involved two UK-wide surveys, which attracted more than 35,000 responses from patients, carers, and health and social care professionals.
Twenty-six key questions were identified, and these were condensed to 10 top research priorities:
What are the best models for delivering long-term cancer care including screening, diagnosing and managing long-term side effects and late-effects of cancer and its treatment?
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?
How can care be better co-ordinated for people living with and beyond cancer who have complex needs (with more than one health problem or receiving care from more than one specialty)?
What causes fatigue in people living with and beyond cancer and what are the best ways to manage it?
What are the short-term and long-term psychological impacts of cancer and its treatment and what are the most effective ways of supporting the psychological wellbeing of all people living with and beyond cancer, their carers and families?
How can the short-term, long-term and late effects of cancer treatments be (a) prevented, and/or (b) best treated/ managed?
What are the biological bases of side-effects of cancer treatment and how can a better understanding lead to improved ways to manage side-effects?
What are the best ways to manage persistent pain caused by cancer or cancer treatments?
What specific lifestyle changes (e.g. diet, exercise and stress reduction) help with recovery from treatment, restore health and improve quality of life?
How can we predict which people living with and beyond cancer will experience long-term side-effects (side-effects which last for years after treatment) and which people will experience late effects (side-effects which do not appear until years after treatment)?