Key learning points:
– Targeted awareness-raising activity has been proven to lead to positive clinical outcomes
– One in five cancers are diagnosed by an emergency presentation
– Patient experience is significantly affected by earlier diagnosis
Every two minutes someone in England will be told they have cancer. But, significant improvements have been made over the last 15 years and more than half of the people who receive a cancer diagnosis will now live for 10 years or more.1 The recent Independent Cancer Taskforce report2 cited that many of these improvements were driven by advances in knowledge of how to treat and control cancer, combined with the commitment of NHS staff to deliver transformative care. However, around 440 people each day still die from cancer in the UK.3 Many of these deaths are unnecessarily premature and it is acknowledged that early diagnosis and access to optimal treatment will play a key part in improving cancer outcomes for patients across the UK.
In recent years there has been a substantial amount of multidisciplinary research conducted to help us understand more about early diagnosis – from behavioural science to primary care research and epidemiological studies. One thing that is clear from all the research is that early diagnosis is a complex conundrum with many interacting elements that will affect the cancer journey for each individual patient. The revised National Awareness and Early Diagnosis Initiative (NAEDI) pathway4 outlined in the British Journal of Cancer earlier this year, highlights just how complex this area is, and shows the non-linear nature of the pathways to diagnosis; from the first onset of symptoms and the individual’s response, to help-seeking, health professional interaction, onward referral, diagnosis and beyond.
This article takes a look at just a handful of the recent reports and papers that are influencing the way we think about early cancer diagnosis.
Changing the behaviour of the public
In England, Scotland and more recently Northern Ireland, there have been advertising campaigns that aim to raise the profile of early diagnosis and cancer symptoms. The hope is that these campaigns will lead to a change, not only in public awareness, but in patient behaviour, with individuals who experience possible symptoms of cancer going to see their GP promptly. The most promising data published on this so far is the Be Clear on Cancer lung campaign. Published in the British Journal of Cancer5 the results from the first national campaign for lung cancer show that when comparing the campaign period with the same time in the previous year, there were significant increases in public awareness of a cough being a symptom of lung cancer; urgent GP referrals for suspected lung cancer; and the proportion of lung cancers diagnosed at stage one (with a decrease in late stage cancer diagnoses). Most promising though, is the 2.3 percentage point increase in surgical resections. The authors of the paper highlight that there was no evidence of a similar effect in the control period. As doctors and nurses, we deal with patients, so although percentages sound interesting, what did it mean in terms of real patient numbers? Well, 700 extra lung cancers were diagnosed, 400 extra cancers were found at an earlier stage and 300 more patients received potentially curative surgery.6
The focus on cancer symptoms via campaigns such as Be Clear on Cancer in England and Detect Cancer Early in Scotland, may have led to a change in the behaviour of a range of healthcare professionals too. Although difficult to track in terms of hard data, there is anecdotal evidence that nurses and pharmacists may be using the campaigns as an opportunity to talk to their patients and customers about potential cancer symptoms.7 And GPs may be more inclined to lower their referral threshold8 or refresh their training during the campaign period.9
Routes to diagnosis
The National Cancer Intelligence Network (NCIN) published its latest findings on routes to diagnosis in autumn.10 It showed that the proportion of cancers diagnosed as a result of emergency presentation at hospital, had decreased. At the same time, the proportion of cancers diagnosed through urgent GP referral with a suspicion of cancer, (two-week wait) had increased. This new data covers patients in England, diagnosed with cancer from 2006 to 2013, with 2011-2013 being published for the first time. The headline statistic is that 25% of cancers were diagnosed as an emergency in 2006. In 2013 this figure had fallen to 20%. This is against a rise overall in the numbers of cases of cancer.
For early diagnosis, this is encouraging as we know that patients diagnosed as an emergency presentation have lower chances of survival compared to those diagnosed via other routes. Those presenting via emergency routes are more likely to have late stage disease and the experience of coming into the system as an emergency is often more distressing for the patient. However, the latest evidence is still showing that there is a great deal of variation across the country and this is a recurring theme across the whole patient pathway.
According to a report earlier this year that focused on imaging capacity across England,11 while demand for the most complex scans (computed tomography and magnetic resonance imaging) is rising by at least 10% each year, the resources in the NHS have not kept pace. Radiologists play a vital role – but with fewer than half as many radiologists per person as the rest of the developed world, it is no wonder that we’re struggling to diagnose cancer earlier.12 It is not only imaging tests that are facing resource and funding challenges, but also endoscopy and genetic testing, to name but a few.
As medical professionals, we all know that the time between the test and receiving the results can be one of the worst for our patients. Many patients describe the anxiety, the feeling of being in limbo with their life on hold until they receive a definitive diagnosis. The imaging capacity report showed that some patients were waiting a month or longer to find out their results.11 Ultimately, getting the answer quicker – and the treatment sooner – could make the vital difference in diagnosing cancer before it has spread, leading to better outcomes and a greater chance of a complete cure.
But again, there may be improvements on the horizon. Following the Independent Cancer Taskforce report,2 the government has already made a series of new commitments that will help tackle the delays and variations we see in diagnostic testing.13 To date, they have committed to:
– A 28 day standard for all patients to be given a definitive cancer diagnosis or the all clear: fully delivered by 2020.
– Additional investment in diagnostics over the next five years, which will be up to £300 million a year by 2020.
– A focus on training an additional 200 staff to carry out endoscopies by 2018, in addition to the extra 250 gastroenterologists the NHS have already committed to train by 2020. They will together be able to carry out up to half a million more endoscopy tests on the NHS by 2020.
– A commitment from NHS England to implement the Independent Cancer Taskforce’s recommendations on molecular diagnostics. This will mean that around 25,000 additional people a year will have their cancers genetically tested to identify the most effective treatments, thus reducing unnecessary chemotherapy sessions.
Research from the London School of Hygiene and Tropical Medicine published in August 2015,14 compared survival for colon, breast, lung, ovarian, rectal and stomach cancers in England, Australia, Canada, Denmark, Norway and Sweden between 1995 and 2009, and survival trends in England up to 2012. It included more than 1.9 million cancer patients in England and another 1.9 million cancer patients from the other five countries.
Of all six countries, cancer survival was lowest in England, while Australia and Sweden had the highest cancer survival overall. Compared with the better performing countries – Australia, Canada, Norway and Sweden – five-year survival was five to 12% lower in England across all of the cancer types measured.
Other data from the International Cancer Benchmarking Partnership15 reinforces the importance of ensuring access to optimal treatment and not just early diagnosis, if we are to improve cancer patient outcomes.
Despite this, England’s cancer survival continues to improve and in some cases faster than elsewhere. Five-year survival from breast cancer improved more in England than in the four leading countries. And, survival for all cancers except ovarian improved faster in England than Australia.
But variation is a multifaceted challenge:
– Health inequalities across England mean there is a potentially avoidable variation in outcomes. There would be around 15,300 fewer cases and 19,200 fewer deaths per year across all cancers combined if socially and economically deprived groups had the same incidence rates as the least deprived.16
– One-year cancer survival in some clinical commissiong groups (CCGs) is more than 10% higher than in others, and this variability cannot be explained solely by correlation with deprivation levels. For CCGs in England, the rate of mortality from cancer in people aged less than 75 years of age ranged from 85 to 176 per 100,000 population (2.1-fold variation).17
– Surgical interventions contribute to around half of cases where cancer is cured,18 yet for some cancers, older patients are less likely to receive this as a treatment option.19
The patient experience
The Independent Cancer Taskforce report2 also highlighted the importance of transforming the patient experience. This will be achieved by diagnosing patients earlier, making sure patients are given the best treatment, preventing more cases of cancer, transforming support for people living with and beyond cancer and providing a better all-round experience for patients.
A paper published in the European Journal of Cancer Care20 earlier this year showed just how fragile patient confidence can be and how a negative experience of diagnosis can trigger a loss of confidence in their care throughout the cancer journey. It found that if it takes more than three trips to the GP to be referred for cancer tests, patients are more likely to be dissatisfied with their overall care, eroding confidence in the doctors and nurses who go on to treat and monitor them.
These worrying levels of dissatisfaction are based on further analysis of survey data from more than 70,000 cancer patients. Of the nearly 60,000 survey respondents diagnosed through their GP, almost 13,300 (23%) had been seen three or more times before being referred for cancer tests. Thirty nine per cent of those who had experienced referral delays were dissatisfied with the support they received from their GP and nurses, compared to 28% of those referred after one or two GP visits.
The authors acknowledge that diagnostic delays are largely due to cancer symptoms being extremely hard to distinguish from other diseases, combined with a lack of accurate and easy-to-use tests. However, GPs need to have a ‘readiness’ to take action. A recent study21 demonstrates a correlation between the readiness to investigate symptoms indicative of cancer and cancer survival rates in a number of countries and jurisdictions, with GPs in England being less likely to refer at the first consultation than their international counterparts.
It is hoped that access to more diagnostic tests and the new National Institute for Health and Care Excellence (NICE) referral guidelines for suspected cancer ‘Suspected Cancer: Recognition and Referral guidelines, NG12’ will give GPs more freedom and confidence to quickly refer patients with symptoms that could be cancer.
Although the new NICE guidance for cancer is primarily a tool to aid GPs in their decision making, other colleagues in the practice setting, especially nurses, may find it a valuable resource too. As part of the development of NG12, a significant amount of evidence was gathered and reviewed. New symptoms have now been included for some cancers, such as recurrent or persistent unexplained UTIs in people aged over 60 for bladder cancer. Based on the latest evidence, NICE has also removed or revised some of the symptoms that had previously featured in the guidance. The NICE website hosts a summary of the consultation and evidence review process as well as a patient guide.
In many practices around the UK, it will be a team effort that will ensure the patient has a better experience. Nurses through their various clinics have the perfect opportunity to listen out for some of the early warning signs of cancer and when concerned, can refer the patient through to the GP. Once a patient has then been referred to secondary care for suspected cancer, the practice management team can keep a track of progress in checking if tests have been performed and that results come back to the GP as promptly as possible.
The evidence shows that we are making progress in terms of improving cancer survival for our patients. However, we still have a long way to go. It is essential that we remove the unnecessary variations that occur along the patient pathway and improve the outcomes for our patients.
Nurse practitioners are playing an increasingly important role in many GP practices. Community nurses and those running clinics for a range of conditions are often in regular dialogue with older patients and those who may have a higher risk of developing cancer. We need to work together, not only within primary care and community settings, but with colleagues in secondary care too – as Professor Greg Rubin explores in a special commission for the Lancet Oncology,22 integration of care is key in both prevention and early diagnosis of cancer.
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2. Achieving world-class cancer outcomes: a strategy for England 2015-2020. Report of the Independent Cancer Taskforce. Report number: 1, 2015.
3. Cancer Research UK. Cancer mortality statistics.
cancerresearchuk.org/health-professional/cancer-statistics/mortality#heading-Zero (accessed 7 October 2015).
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5. Ironmonger L, Ohuma E, Ormiston-Smith N, Gildea C, Thomson CS, Peake MD: An Evaluation of the impact of large scale interventions to raise public awareness of a lung cancer symptom. British Journal of Cancer 2015;112: 207-216. nature.com/bjc/journal/v112/n1/full/bjc2014596a.html (accessed 7 October 2015).
6. Cancer Research UK press release: Thousands more people get urgent lung cancer tests thanks to cough campaign: 3 December 2014 cancerresearchuk.org/about-us/cancer-news/press-release/2014-12-03-thousands-more-people-get-urgent-lung-cancer-tests-thanks-to-cough-campaign (accessed 7 October 2015).
7. Department of Health and Public Health England commissioned qualitative research. Conducted by TNS BMRB and Research Works. Various items commissioned between 2010-2014
8. Roope R: RCGP clinical lead for cancer and GP. Personal view expressed October 2015.
9. Cancer Research UK. Personal communication to Department of
Health and Public Health England. Based on information gathered from a CRUK commissioned training module on oesophago-gastric cancers. May 2015
10. National Cancer Intelligence Network. Routes to Diagnosis. ncin.org.uk/publications/routes_to_diagnosis (accessed 7 October 2015).
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12. Maskell G. Consultant radiologist in Truro, and President of the Royal College of Radiologists. Cancer Research UK Blog: Dr Giles Maskell: ‘waiting a month or more for scan results is shocking’ 6 September 2015. scienceblog.cancerresearchuk.org/2015/09/06/dr-giles-maskell-waiting-a-month-or-more-for-scan-results-is-shocking/ (accessed 7 October 2015).
13. Department of Health press release: From 2020, people with suspected cancer will be diagnosed faster. 13 September 2015 gov.uk/government/news/from-2020-people-with-suspected-cancer-will-be-diagnosed-faster (accessed 21 October 2015).and Bainbridge S. Policy advisor at Cancer Research UK. Cancer Research UK Blog: Great news as Government signals backing for cancer plan. 13 September 2015 http://scienceblog.cancerresearchuk.org/2015/09/13/great-news-as-government-signals-backing-for-cancer-plan/
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16. Cancer Research UK, Cancer mortality by socio-economic group cancerresearchuk.org/health-professional/cancer-statistics/mortality/socio-economic-group#heading-Zero (accessed 6 October 2016) and National Cancer Intelligence Network.
Cancer by Deprivation in England Incidence, 1996-2010 Mortality, 1997-2011. 2014.
17. Public Health England. The NHS Atlas of Variation in Healthcare, September 2015. rightcare.nhs.uk/atlas/downloads/2909/RC_nhsAtlasFULL_MED_290915.pdf (accessed 6 October 2015)
18. Price, P. and K.I Sikora, T., Treatment of Cancer. 2008, London: Edward Arnold Ltd. and Cancer Research UK, Cancer diagnosis and treatment statistics. cancerresearchuk.org/health-professional/cancer-statistics/diagnosis-and-treatment#heading-Zero (accessed 6 October 2015)
19. Fisher S, Gao H, Yasui Y, Dabbs K, Winget M. Treatment variation in patients diagnosed with early stage breast cancer in Alberta from 2002 to 2010: a population-based study. BMC Health Services Research 2015;15: 35. ncbi.nlm.nih.gov/pmc/articles/PMC4308832/ (accessed 6 October 2015).
20. Mendonca SC, Abel GA, Saunders CL, Wardle J, Lyratzopoulos G. Pre-referral general practitioner consultations and subsequent experience of cancer care: evidence from the English Cancer Patient Experience Survey. European Journal of Cancer Care. 2015. onlinelibrary.wiley.com/doi/10.1111/ecc.12353/pdf (accessed 6 October 2015).
21. Rose P. Explaining variation in cancer survival between 11 jurisdictions in the International Cancer Benchmarking Partnership: a primary care vignette survey. BMJ Open 2015;5:e007212. bmjopen.bmj.com/content/5/5/e007212.full (accessed 6 October 2015).
22. Rubin G. The expanding role of primary care in cancer control.
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