Although cancer outcomes have been gradually improving in the past 20 years, survival rates in the UK are still lagging behind those in other parts of Europe. Late diagnosis has been identified as a significant contributory factor, but collaborative initiatives are now being established to address the problem of patients presenting only when they have advanced disease.
Cancer is the leading cause of mortality in people under the age of 75 years in the UK.1 Each year, about 230,000 people in England will be diagnosed with cancer and about 125,000 will die from the disease.
As a practising GP, I have seen significant advances in cancer diagnosis and treatment since I qualified as a doctor in 1983. Cancer affects one in three people, so most of us will know somebody who has experienced the disease. Owing to modern treatments, there are thousands of relatively healthy cancer survivors. There is much to be proud of, but we can do better.
The need to improve cancer outcomes
Although cancer outcomes have been gradually improving since the 1990s, figures in 2006 showed that out of 28 European countries, the UK ranked ninth for male cancer mortality and 22nd for female cancer mortality.
This is despite having a comprehensive NHS with a system of list-based primary care. What are the reasons for this worrying finding? One of the main ones is late diagnosis.
It is now recognised that late presentation and delayed diagnosis are major contributors to poorer survival rates in the UK. Many patients have advanced disease at the time of presentation, which makes cure much less likely.
What can be done to address the question of late diagnosis? The first step is to ensure a comprehensive overall strategy and vision for cancer. In 2007, the DoH published Cancer Reform Strategy, an ambitious five-year plan to ensure world-class cancer services and outcomes by 2012. The strategy, which has been widely welcomed and commands significant political support, outlines six key areas of action (see box 1).
|BOX 1: CANCER REFORM STRATEGY|
The DoH Cancer Reform Strategy has established six key areas of action in the care of cancer patients
Cancer Reform Strategy has established a National Awareness and Early Diagnosis Initiative (NAEDI). At the conference to mark its launch in late 2008, Professor Michel Coleman of Cancer Research UK stated that up to 11,000 deaths from cancer could have been avoided in Britain each year if survival figures matched the best in Europe.
The National Patient Safety Agency (NPSA), with its interest in incident reporting and avoiding harm, has also established a programme of work in cancer, including a stream of early diagnosis, as part of the NAEDI.
Understanding delays in diagnosis
It is encouraging to see concerted effort, leadership and engagement of patients and doctors to address this important question. It is too early to be definitive and dogmatic about the science of late diagnosis, particularly around interventions. However, some emerging thinking is helping us to understand the matter much more clearly. High quality research from Denmark tells us that delay can fall into one of three categories; patient, doctor (GP) or system.2 Patient delay is where a patient with symptoms that could be caused by cancer (for example, rectal bleeding) delays seeking help, perhaps as a result of symptom misattribution.
Doctor delay is where the doctor (usually the GP) makes an incorrect or inaccurate assessment of a patient's symptoms, perhaps because of diagnostic overshadowing.
System delays are the wait for appointments, tests, scans and biopsy results, or where test results are lost or misfiled. Total delay can therefore be measured as the time from first symptom to the commencement of definitive treatment.
Initial analysis suggests that patient and primary care delays are the major reasons for the UK's poorer cancer survival rates. This understanding is crucial in devising strategies for improvement. It can be seen that engaging the public and patients is a major requirement for ensuring that people come forward with symptoms and signs suggestive of cancer.
There is some evidence to suggest that barriers to access deter some patients from seeking timely medical help. When they do present, it is imperative that they experience high quality and consistent primary care that will correctly evaluate symptoms, undertake relevant investigations and fast-track appropriate patients.
Crucial to this are effective doctor/patient communication, high evidence-based clinical standards, access to investigations and imaging, and co-ordination of care with tracking of results and appointments.
Rare or uncommon cancers constitute a particular difficulty. Patients with less common cancers often report a delay in being correctly diagnosed. A rare or less common condition can be very difficult for GPs to diagnose because cardinal symptoms have low predictive values. Generically, a rare disease is defined as a condition that affects five or fewer people in every 10,000 population, but collectively, they represent 6-8 per cent of cancer cases in Europe.
About half of children and young people with cancer visit their GP with symptoms four times before being referred to a specialist. Cancer is normally not suspected as a diagnosis by the patient or the GP until symptoms persist or pain worsens after several visits.
Learning from patient safety incidents
Much more research and analysis is required to understand the reasons for delay. Reporting of patient safety incidents can help significantly in understanding risks and developing solutions. The NPSA has a national reporting and learning system for patient safety incidents. Thousands of reports are made, but most come from secondary care. General practice, where there is perhaps the greatest potential to learn from missed diagnoses, only contributes to 0.4 per cent of all national reports.
GPs have their own system of reporting, the significant event audit (SEA). This is widely practised and is part of the quality and outcomes framework. Primary healthcare teams have to undertake a review of 12 events, including new cancer diagnoses, over three years.
SEA has many strengths, particularly its educational ethos. However, there are concerns that its promise has not been fulfilled because the quality of SEA varies, there is no systematic sharing of learning and the level of reporting to local and national systems is low. There is a need for more standardisation and improvement in the practice of SEA, and the publication of an SEA toolkit from the NPSA and the RCGP is welcome.
Although GPs are in the spotlight over the question of late diagnosis, it is important to see them as part of the solution. Most GPs are not complacent and recognise that cancer is a leading cause for concern for the public and that prompt diagnosis is important to patients and doctors.3
GPs diagnose thousands of cases of cancer every year through the two-week fast track scheme. They investigate and assess many more patients who do not have cancer. Almost 750,000 people visit their GP every day and making an accurate diagnosis can sometimes be difficult, because of undifferentiated presentations. Greater vigilance is needed, but it is also important to avoid routinely overinvestigating or making inappropriate referrals.
Action is necessary
Steps, no matter how small, can be taken now by all those involved in cancer, to make a difference. Greater vigilance is required by GPs to fast-track more appropriate patients, because it is well recognised that a significant proportion of patients who have cancer are diagnosed outside the two-week system, that is, in general clinics, A&E or acute wards.
Striving for even higher quality communication with patients is crucial to inform more structured clinical decision-making. All providers must ask how good the practice system is at dealing with test results. Can it detect overdue and missing results? Can it highlight if serious pathology or significant results are expected? Strong leadership and ambition in commissioning can create better service models.
It is necessary to stretch the limits of the two-week wait. If a GP strongly suspects a patient has cancer, I would suggest that a three-day fast-track would be appropriate. Finally, what are the essential ingredients for improving cancer survival? As ever, they include leadership, measurement and the engagement of front-line clinicians, working with patients and making the best use of information and technology.
Timing and context are vital in managing this matter aggressively, given current policies, the NHS Next Stage Review, World Class Commissioning, the appraisal and revalidation of doctors, the development of commissioning quality indicators and the accreditation of providers by the Care Quality Commission.
There is a clear national process and leadership is available through the NAEDI. What is needed now is local action. This is not just a matter for primary care, but a wider strategic question for the health economy as a whole.
I would therefore urge all local health communities and leaders to create a process for addressing the question of late diagnosis of cancer and to take concerted action, including the development of better service delivery models.
- Professor Mayur Lakhani is a GP and former chairman of the RCGP. He chairs the National Patient Safety Agency early diagnosis cancer safety subcommittee. The views expressed here are his own
Competing interests: Professor Lakhani is a council member of the RCGP, associate board member of the NHS Institute for Innovation and Improvement, and member of the National Awareness and Early Diagnosis Initiative. He has received project honoraria and expenses from the National Patient Safety Agency and CLIC Sargent
1. DoH. Cancer Reform Strategy. HMSO, London, 2007. (accessed 27 January 2009).
2. Hansen RP, Olesen F, Sorensen HT et al. Socioeconomic patient characteristics predict delay in cancer diagnosis. BMC Health Serv Res 2008; 8: 49.
3. RCGP. In Safer Hands. 2004. (accessed 27 January 2009).