Following success in research, diagnosis and treatment, more people are living longer with cancer. In the UK alone there were 2.5 million people living with cancer in 2015, a figure expected to rise to 4 million by 2030.
However, the increased success in some areas is showing the clear gap in the knowledge of others. The long-term consequences of cancer can be seriously detrimental to quality of life, but with focus and funding targeted towards a cure, these factors can often be overlooked.
New research, presented at the 2018 NCRI Cancer Conference (4-6 November, Glasgow, Scotland), proposes that these issues can be split into 10 new research priorities. Developed in response to the NHS’s Cancer Strategy to achieve the best cancer outcomes, this project aimed to determine ways to help people live better with and after cancer.
These priorities have been developed by healthcare professionals as well as the cancer patients themselves in a UK-wide survey that gained over 3,500 responses. It is the first time patients have been given the opportunity to determine what is to be prioritised in research.
The questions raised include: how can treatment side-effects, such as fatigue, be prevented or managed; what is the impact on mental health; can lifestyle changes restore patients’ health; and can we predict who will experience side effects?
The results were presented by Feng Li from the NCRI (UK), Li commented: “The fact that millions of people are living with and beyond cancer is testament to the success of research on treatment and diagnosis. However, many of these people are living with the side-effects of cancer and treatment, and suffering from poor quality of life.”
“There are not enough researchers studying these issues and there’s very little funding currently available for this work. This is an enormous gap in our knowledge and it’s one that can only begin to be filled if we have a starting point. We’ve looked at cancer research in the UK but the situation is similar around the world” she continues.
The NCRI is now working with funders, researchers and the NHS to turn these priorities into research and help them benefit patients. The goal is to involve researchers of other chronic diseases to develop multi-disciplinary research projects that help improve quality of life for individuals with a wide range of diseases.
Sam Ahmedzai from the University of Sheffield (UK) commented: “Funders should pay attention and respond to the priorities. We need to make sure they are translated into funded research programmes, so that we can make much-needed progress in improving health and quality of life for those people living with the consequences of cancer.”
The hope is that the results of this project will help to highlight gaps in cancer research and act to influence major funders of cancer research to support more work in these areas.
“There is a small amount of research going on in this area, supported by NCRI Partners and others, but we need to drastically increase the amount of research in the next 5 years and accelerate the translation of research into clinical practice” Li concludes.
UK Top 10 living with and beyond cancer 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 (e.g. primary and secondary care, voluntary organisations, self-management, carer involvement, use of digital technology, etc)?
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)?