In partnership with NHS trusts and six universities, a group of the UK's leading researchers into primary care cancer diagnostics are working together in a five year programme. If successful the programme should transform the diagnosis of cancer and prevent hundreds of unnecessary deaths each year.
The programme objectives are to design and test new service pathways to cancer diagnosis which are based on sound medical evidence, make efficient use of resources and take full account of patients' views.
In the UK, an estimated 5000 lives are lost annually as a result of late diagnosis. Improvements could arise from better GP selection of patients to refer, liberalisation of entry to rapid access clinics or an increase in investigations in primary care. Choosing between these requires knowledge/better understanding of patient factors, the actual risk of cancer from specific symptoms, current diagnostic pathways and patient and clinician preferences.
The Discovery Programme aims to identify all these parameters and use them to design and test improved investigative services for the NHS from theoretical and practical perspectives.
The work of the programme has been split into three themes. Themes 1 and 2 are scheduled to run concurrently for three years. Theme 3 runs over the five year period but uses the research in the first two themes and is therefore concentrated in the fourth and fifth years.
The programme is a partnership between the Universities of Bristol, Cambridge, Bangor, Durham, Oxford, Exeter, The National Institute for Health Research and Bristol NHS Clinical Commissioning Group (formally NHS Bristol). The administrative centre of the programme is at University of Bristol.
Exemplar cancers - Throughout the programme three cancers, lung, colorectal and pancreatic have been selected as exemplars. These exemplars have been selected because each illustrates a different area of diagnostic / investigative difficulty and between them a selection of contrasting features which have a wider relevance.
Theme 1 - The SYMPTOM Study has a patient focus and studies symptoms before they are reported to doctors. Specially designed questionnaires and in-depth interviews will be used to find out about patients' symptoms, what prompted them to seek help and what caused delays ... more about The SYMPTOM Study
Theme 2 - The Caper Studies comprises two projects which look at what happens when a symptom is reported to primary care. We know the risk of cancer for a few symptoms but this programme will work out precisely the risk of cancer with specific symptoms for all the important cancers that have not been studied before. Using the Discovery exemplar cancers, referral routes will then be mapped out to identify where errors are occurring ... more about The Caper Studies
Theme 3 - Designing New Diagnostic Pathways looks at how new services can be designed. There are three distinct parts. (i) A large survey - The Pivot Study - will find out how the public balances the risks of cancer against the inconvenience or benefits of testing. This will derive a threshold figure of cancer risk that the public believes warrants urgent investigation. (ii) The second part of theme 3 involves modelling investigative pathways. Using information from the Symptom, Caper and Pivot studies the cost efficiency of different diagnostic pathways will be modelled. (iii) Part 3 is the culmination of the research project in which data from the entire programme is used to develop new diagnostic pathways as real life services will be designed and tested in two Primary Care Trusts ... more about: the Pivot Study; Modelling Investigative Pathways; Development of Diagnostic Pathways.
Discovery is a patient centred research programme. Patients' views are at the core of the whole programme and are represented from the design stage, through to application, senior management, selected steering groups and data analysis.
There are two patient representatives on the Project Steering Committee and four patient representatives on the SYMPTOM Study Steering Committee.
At the heart of Theme 1 (The SYMPTOM Study) are questionnaires to establish patients' perspectives of their symptoms and their pathways to seeking help from their GP, referral and diagnosis. Interviews are conducted as soon after the diagnosis as possible to enhance patients' recall of symptoms and events leading to diagnosis. We have developed an innovative approach to collecting patients' perspectives on the level of risk worthy of investigation in Project 3.1 (The Pivot Study). This will contribute to being able to define an optimal service in terms which are very relevant and important to the patient.
The other principal consumer group are General Practitioners. Six practising GPs are working within the programme and play a vital role in the focus of Theme 2.
Several government initiatives have followed since the Cancer Plan was published in 2000. Resources have been put into awareness campaigns, the creation of guidance for selection of patients for rapid investigation by GPs, the provision of 2 week wait clinics and improved therapies. The Cancer Reform Strategy was published in 2007 and in 2008 the National Awareness and Early Diagnosis Initiative (NAEDI) was launched.
To date, however, these initiatives have failed to produce clear improvements in staging or mortality rates and there is little real evidence to support current diagnostic guidelines. The issues are complex but recent research and the focus afforded by groups such as NAEDI, have been encouraging and point the way to future more comprehensive improvements in the diagnosis of cancer.
The human cost: nearly 230,000 new cancers are diagnosed and over 125,000 people die from cancer in England each year. Although improving, survival rates in the UK continue to be below comparable developed countries for many years. There are also major inequalities in cancer survival, with the prognosis worsening with increasing poverty. These inequalities reflect diagnostic differences as well as treatment differences.
Substantial progress in overall cancer mortality has been made in recent years, falling by 17% for those under 75 from 1993 to 2006. However, at the launch of NAEDI in 2008, the National Cancer Director outlined his own estimate of 5000 lives a year that could be saved by earlier diagnosis from improvements in all aspects of cancer services.
The problems of diagnosis
The Cancer Reform Strategy set a new target of two thirds of cancers to be diagnosed at a curable stage. For this to happen patients must consult earlier, clinicians must consider cancer as a possibility earlier, and they must refer more patients for definitive investigation. These are the three key stages in the diagnosis of cancer and the problems at each stage are considered here along with the research needed to provide answers.
Patient delays before presentation to primary care: Over 90% of total cancers in England present with symptoms, even with current and planned screening programmes. Patients with these symptoms will usually present to primary care but many symptoms potentially relating to cancer remain undisclosed. The factors that prompt or hinder patients to consult their doctor are not well understood but include: current health, co-existing illnesses, family experience of cancer, beliefs about symptoms or their consequences, fear and access to primary care.
Future interventions will need to understand these issues if they are to be successful.
Delays and difficulties at primary care presentation: The main problem facing a GP is in the selection of patients for investigation. This arises because almost every symptom of cancer has a very much more common benign cause.
The NICE referral guidelines identify the 'red flag' symptoms, but the lack of an underpinning evidence base means that many potential cases are not initially identified. GPs have a difficult balancing act to perform between over and under investigation: over investigation consumes resources, increases waiting times and risks complications from investigations, while under investigation risks delay and a potentially less good prognosis.
A quantified level of risk for each cancer, given the presentation of particular symptoms, would eliminate many of the errors and associated costs.
Delays and difficulties at the primary / secondary care interface: the GP faces two main questions.
First, at what level of cancer risk is further investigation warranted? No specific level of risk of cancer for investigation has been agreed. Three perspectives need to be balanced, those of the patient, the GP and the service provider.
Second, to where should the referral be made? The urgent two week clinic offers a one size fits all option but a recent systematic review of colorectal clinics found only a quarter of cancers taking that route to diagnosis. If that is anywhere near typical for the other cancers then the route to diagnosis is far from straightforward. Alternative strategies might be to liberalise the entry to rapid access clinics or to increase the availability of investigations in primary care.
Some selected research papers are highlighted below, followed by a list of these and other papers which have contributed to the development of the Discovery Programme.
Patient level research
Secondary analyses of data from the 'National Survey of NHS Patients: Cancer' showed the variable impact of age, marital status, ethnic group and social class on delays in presentation with symptoms of six cancers (lung, breast, colorectal, ovarian, prostate and non-Hodgkin's lymphoma)
A systematic review of patient delays in presenting with symptoms suggested that fear of embarrassment (that the symptoms were trivial or affected a sensitive body area), or fear of cancer (pain, suffering or death) were major contributors to delay in diagnosis.
Older age, not disclosing symptoms to someone close, denial of symptoms and/or non-recognition of symptom seriousness, and negative attitudes to the health professionals have been identified as factors influencing delays in symptom presentation across a number of cancers. It is unknown how much these factors contribute to variable outcomes across symptoms and across cancers.
Primary care research
Four reviews have been published of lung, colon, prostate and ovarian cancer symptoms in primary care.
Individual studies have reported on colorectal, lung, breast, prostate, ovarian, pancreatic and brain tumours. Most cancer sites have one or zero studies allowing the risks from symptoms to be quantified. Some studies on individual symptoms are included.
Pathways and the primary / secondary interface research
At the primary / secondary interface many audits and one systematic review of the performance of two week clinics have been published. Common criticisms are the low percentage of patients at these clinics who transpire to have cancer, and the high proportion of cancer patients who take the slower routine referral route.
Pathways have been mapped for colorectal, lung and prostate cancers. All reported after the introduction of NICE guidelines and examine patients' routes from first symptom to diagnosis.
New Discovery Research publication
The SYMPTOM Study team's research into symptom appraisal for colorectal cancer has been published in BMJ Open. This is a unique piece of research which compares the appraisal and help seeking experiences of patients with colorectal cancer symptoms who go on to have cancer and those who turn out to have non-cancer conditions. The research did not identify any clear differences between the two groups but did identify important barriers to presentation around the ‘private nature’ of colorectal symptoms which will prove useful to policy makers and the design of awareness campaigns. To read more about the research paper see the results section here.
Discovery conference slides available & new research publications
The Discovery Programme held its research conference at the Royal College of General Practitioners on June 2nd 2015. The team presented their research findings and outlined the impact of the programme to a wide range of patient groups, clinicians, policy makers, researchers and journalists. The PowerPoint slides used during the presentation have been uploaded to this website and can be viewed here.
There are also 2 new research papers to report. Chantal Balasooriya-Smeekens has published the literature review of her PhD in Psycho-Oncology, "The role of emotions in time to presentation for symptoms suggestive of cancer: a systematic review of quantitative studies". Abstract and publication details are here and further papers from Chantal's PhD will be published soon.
Nafees Din has published a new paper under the Discovery related research umbrella. The paper uses Discovery data drawn from the CAPER (theme 2) studies and considers "Age and Gender Variations in Cancer Diagnostic Intervals in 15 Cancers". Full publication details and abstract can be found here.