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 determine priorities for research that will help people live better with and beyond cancer (LWBC), NCRI partnered with the James Lind Alliance on a Priority Setting Partnership. The top 10 research priorities were announced in 2018, and even in such a short period of time since, the landscape for this research area has changed dramatically. At NCRI we have established the new LWBC Group and are now hosting the second annual Living With and Beyond Cancer Meeting. Here, we provide some examples of the progress made in relation to the LWBC research priorities.

Living With and Beyond Cancer Event, Manchester, 2019

Priority 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)?

NCRI’s partnership with the British Society for Immunology (BSI) is a potential gamechanger for immuno oncology and aims to create the appropriate environment to promote the interaction between researchers and clinicians in the cancer immunology fields to facilitate translational research activity. One potential outcome is predicting late and long-term effects of immunotherapy treatments.

Priority 9

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

Macmillan Cancer Support have created principals and guidance for prehabilitation, to help healthcare professionals support people with cancer to live life as fully as they can.

Also, 15 leading health and social care charities have developed the “We Are Undefeatable” movement, to support and encourage people with a range of long-term health conditions to be active in a way that works with each person’s conditions.

And at the end of 2019 the NHS announced plans to offer cancer patients gym sessions before they start chemotherapy, in the hope of boosting the speed of their recovery.

Priority 8

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

In research area that previously received little attention, Julie Armoogum et al. from the University of the West of England gained hugely valuable insights into the experience of persistent pain among people living with and beyond cancer. A qualitative research study in this area is planned and will open for recruitment soon.

Priority 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?

A trial funded by the Medical Research Council (MRC), led by Dr Barry Laird, and developed in collaboration with NCRI and NIHR Cancer and Nutrition Collaboration, will investigate a radical new approach using an immunotherapy treatment, bermekimab, that could help with improving outcomes in cancer, including reducing symptoms such as weight loss and decreased mobility, improving quality of life.

Priority 6         

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

The UK Oncology Nursing Society has published national guidelines for managing patients with disease or treatment complications, including the impact of immune-related adverse events (irAE).

The National Institute for Health Research (NIHR) and MRC have also announced funding for research looking to mitigate the adverse effects of health and social care interventions.

Priority 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?

A new study involving using virtual reality (VR) to improve patient wellbeing is being conducted at The Royal Marsden. The SafeSpace study, supported by Macmillan Cancer Support, will investigate whether VR technology could help improve cancer patients’ wellbeing and reduce their stress and anxiety when undergoing treatment.

Priority 4

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

RESTORE is an evidence-based tool to support people living with cancer related fatigue developed by Macmillan Cancer Support and the University of Southampton. It provides information about things that patients can do to help them cope with cancer related fatigue.

Priority 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)?

Multimorbidity is receiving more attention with a number of resources now available as well as new funding opportunities.

The MRC have funding available to tackle multimorbidity at scale including understanding disease clusters, determinants and biological pathways. A total of £20m is available with £3-5m for each collaboration.

Academy of Medical Sciences, in conjunction with the MRC, NIHR, and Wellcome have established a central platform and resource repository to share helpful resources relevant to multimorbidity, including a research framework to help co-ordinate funders’ efforts and initiatives and highlight opportunities to work together.

The Richmond Group of Charities, a collaboration of 14 of the leading health and social care organisations in the voluntary sector, have published the multiple conditions guidebook, to provide insight, tools and signposting to others with first-hand experience of designing and delivering approaches that benefit people with multiple conditions. The Taskforce on Multiple Conditions is a partnership between the Richmond Group of Charities, Guy’s and St Thomas’ Charity and the Royal College of General Practitioners.

Priority 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?

The Brain Tumour Charity have developed BRAIN, an online app to help people cope with a brain tumour. The app has been developed with ten years of brain tumour data from NHS Digital and Public Health England to build insight for patients such as treatments offered, paths to first treatment and tumour incidence per region.

Priority 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)?

NHS England is committed to providing personalised care and improving quality of life outcomes and trusts such as Imperial College Healthcare, The Royal Marsden and The Christie are making it happen!