The UK top research priorities for living with and beyond cancer

by Rachel Laurence

By 2030 four million people in the UK will be living with the long-term consequences of cancer, but currently there is very little research on the problems they face and how these can be tackled. To help them live better lives, more focused research is needed.

To determine priorities for research that will help people live better with and beyond cancer, NCRI partnered with the James Lind Alliance on a Priority Setting Partnership. The two-year project involved two UK-wide surveys which attracted more than 3500 responses from patients, carers, and health and social care professionals. From these, we identified 26 key questions and distilled these down to 10 top research priorities.

This is the first time that clear research priorities have been identified in this area. Find out the UK Top living with and beyond cancer research priorities below.

Question 1

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 (e.g. primary and secondary care, voluntary organisations, self-management, carer involvement, use of digital technology, etc)?

Question 2

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?

Question 3

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)?

Question 4

What causes fatigue in people living with and beyond cancer and what are the best ways to manage it?

Question 5

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?

Question 6

How can the short-term, long-term and late effects of cancer treatments be (a) prevented, and/or (b) best treated/ managed?

Question 7

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?

Question 8

What are the best ways to manage persistent pain caused by cancer or cancer treatments?

Question 9

What specific lifestyle changes (e.g. diet, exercise and stress reduction) help with recovery from treatment, restore health and improve quality of life?

Question 10

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)?

Question 11

What are the most effective ways to stop cancer coming back (combining treatments and life-style changes)?

Question 12

What are the social, financial and economic impacts of living with and beyond cancer – how does it affect families, relationships, finances, work and use of NHS services?

Question 13

What are the best ways to cope with the fear and anxiety about cancer returning (combining self-management approaches, treatments and psychological support)?

Question 14

How can we predict who is at risk of developing mental health conditions in people living with and beyond cancer (e.g. depression) and what are the best ways of supporting those with mental health conditions?

Question 15

What are the best ways to support people living with and beyond cancer to make lifestyle changes to improve their health?

Question 16

If people with cancer are involved in their own healthcare decisions (including participating in multi-disciplinary team meetings with health professionals), does this lead to better outcomes?

Question 17

What are the psychological and social impacts on children who have a parent (or parents) with cancer, and what are the best ways to support those children?

Question 18

What is the best form of rehabilitation and other support to help people living with and beyond cancer return to or maintain their usual activities (e.g. work)?

Question 19

What are the best ways to manage the consequences of nerve damage caused by cancer treatments?

Question 20

How do the support needs of people with rare and less common cancers differ from people with more common cancers, and how are those needs best met?

Question 21

What can be done to reduce and manage the impact of cancer treatments on people’s sex lives?

Question 22

What are the best ways to support people living with and beyond cancer who live alone?

Question 23

How is cancer perceived across multiple black and minority ethnic groups – what are the similarities and differences?

Question 24

Can lymphoedema be prevented? If not, how is it best treated/ managed?

Question 25

What is the optimal follow-up approach to detect whether a cancer has come back?

Question 26

What are the spiritual care needs of people living with and beyond cancer?

Register your research

The NCRI welcome information in relation to ongoing or planned research which addresses any of the Top 26 living with and beyond cancer research questions, so we can analyse the current research landscape and help to accelerate research into practice

» Please register your research here.

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