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.
Priority Research Questions
- 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)?Read More
Below are examples of questions people submitted to us which we then merged into the above research question.Models for delivering long-term cancer care is important to me because we need more services in the community. More research is needed to understand what works so that people can benefit from support that is closer to where they live.What is the role of community pharmacy in supporting patients living with or beyond cancer?What would patients like to see in a cancer care review in primary care and at what point does a patient feel it would be appropriate to have a review of their cancer and treatment by their GP?Post treatment surveillance strategies: the number of cancer survivors is rising and becoming a strain on resources (clinician time in particular). With increasingly reliable detection tools such as circulating tumour DNA (ctDNA, liquid biopsy), and smart phones, could patients monitor themselves using AI (artificial intelligence)? Self-directed post treatment surveillance?
- 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?Read More
Below are examples of questions people submitted to us which we then merged into the above research question.Why is it not realy recognised as an illness as most doctors say before radiation treatment there is not that many side effects yet i suffered from day 1 of radiation to the point were i wanted it to stop.Who is going to really tell me the truth about the after effects of cancer treatment?Would more time to talk through the implications of cancer treatment have altered treatment decisions?
- 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)?Read More
Below are examples of questions people submitted to us which we then merged into the above research question.How people are treated by other specialties eg asthma/ breathing clinic. I am now seen by many other specialties, not directly related to my cancer and they almost never consider my years of treatment, side effects or psychological effects. They focus exclusively on their area. Also almost never read my notes.How should people with mulltiple health conditions including cancer (either as a chronic condidion or in disease free survival, not at end stage) be best assessed and managed by health and social care services in order to provide best supportive care within a very tight financial environment for those who need it most?How do consultants from various disciplines (ie conditions beyond cancer) work with oncologists to optimise treatment for their patients?
- Question 4 What causes fatigue in people living with and beyond cancer and what are the best ways to manage it?Read MoreWhy do some people become extremely fatigued, even after their disease is in remission, and what can be done to really improve how they feel?What strategies could be developed to help manage post cancer fatigue and educate others that this is not “normal” tiredness’? For many LWBC fatigue is their most disabling symptom.Is there anything, apart from exercise, which will ease the fatigue which continues years after treatment? Many people suffer and some answers from research in this matter would be good.
- 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?Read More
Having cancer is not just me, it affects my family and friends and employers in different ways. Understanding how to help would support the well-being of the person. One answer doesn’t fit all cancer patients. The latter is most important to understand.
yes psychological impact – because this is the one give least importance in many cancer centres by health professionals and the NHS.
What psychological support helps people and their carers transition to living with cancer.What is the best way to support patients psychologically finishing treatment for cancer?
- Question 6How can the short-term, long-term and late effects of cancer treatments be (a) prevented, and/or (b) best treated/ managed?Read MoreHow can the long-term, including the permanent, side effects of immunotherapy (e.g. Ipilimumab) be best managed by patients and professionals?Is “chemo brain” real? I started noticing my short-term memory sometimes being bad 3 or 4 years after treatment finished. Could this be an after effect of chemo?What can you do to mitigate the after effects of chemo on your guts and immune system e.g. allergies post chemo?
- Question 7What are the biological bases of side-effects of cancer treatment and how can a better understanding lead to improved ways to manage side-effects?Read MoreCan the side effects both short term and long term of any treatment for cancer be mitigated beyond 5, 10, 15 and 20 years by investigating the microbiological nature of these side effects?At the cellular/molecular level, how does cancer treatment cause the mid – long term effects that patients experience?
- Question 8What are the best ways to manage persistent pain caused by cancer or cancer treatments?Read MorePersistent pain needs to be better controlled. No one should live in painIt has taken me personally, many years to realise the impact that having cancer and the necessary treatment and surgery actually had on me. Living with the psychological effects of physical disfigurement (limb amputation) and chronic pain (phantom limb pain) is difficult. Chronic pain causes sleep disturbance and fatigue and therefore reduces my productivity at work and detrimentally affects mood.How to improve the quality of life of inoperable pancreatic cancer patients. This will relate at least to pain relief and diet.
- Question 9What specific lifestyle changes (e.g. diet, exercise and stress reduction) help with recovery from treatment, restore health and improve quality of life?Read MoreDo nutritional supplements including energy drinks, omega-3 supplements etc improve quality of life in cancer patients?What lifestyle interventions (exercise, strength training) improves quality of life?What role does achieving and maintaining a healthy weight (preventing weight gain and weight loss during and after treatment) have in cancer survivorship?
- Question 10How 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)?Read MoreAre there any factors which could be identified which would give patients some idea of any increased risk of developing chronic peripheral neuropathy following platinum based chemotherapy? (e.g. genetic predisposition?)I have returned o work full time as they say I am cancer free ! Which is great but I still have medical problems which the treatment has left with me! And that seems to be a guessing game with the none cancer doctors I now see.What known percentage of patients can expect side effects from radiotherapy?
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 accelerating research into practice
- Question 6