At a glance
- Non-specific symptoms make fast, accurate diagnosis of cancer in primary care challenging.
- Initial misattribution of symptoms to other diseases is common, leading to lengthy waits between consultations and worse outcomes in some patients
- A systems approach to research and service development could reduce unnecessary delays in diagnosis by anticipating what is likely to happen and creating ways of tracking and monitoring patients’ progress.
Why it matters
During the COVID-19 pandemic, a lack of diagnostic testing and contact with primary care added to a growing backlog of patients waiting to have their cancer symptoms investigated. The backlog, which delayed cancer diagnoses and treatment, could lead to a potential 3500 extra deaths from cancers such as breast, colorectal, oesophageal, and lung cancer over the next few years just in England.
There are pathways to refer urgent cases where cancer is highly suspected, yet they are used more for some types of cancer than others. Testicular and breast cancers are far more likely to be diagnosed this way than brain cancers or leukaemia. Many people with pancreatic, liver or stomach cancer are diagnosed because of an emergency hospital admission.
Past research has focussed on improving the first consultation with a GP or other primary care professional, but the process of diagnosing cancer involves a range of professionals, processes, and meetings. Would a wider, systems approach have more impact?
What causes the delays?
When it comes to symptoms that might suggest cancer, there are two types of patients. The first group has specific symptoms that are like warning signs, such as a lump in the breast or bleeding from the rectum, which are strongly associated with a particular type of cancer. These symptoms are called “red flag” symptoms and require urgent referral to a specialist for further assessment. The second group of patients has non-specific symptoms (like weight loss or tiredness) that could be caused by a variety of conditions, including cancer, but are not strongly linked to any particular type of cancer. These symptoms can make it harder for doctors to identify the cause of the problem, and referrals may take longer as a result.
For patients with suspected cancer, the diagnostic process can be complex, with many steps involved. This can lead to delays, mistakes, and communication problems, which can cause patients to worry unnecessarily and lead to further delays in diagnosis and treatment.
Although there have been many attempts to try and reduce delays in cancer diagnosis, these have often focused on improving the accuracy of the initial consultation. This approach assumes that it is possible to identify cancer symptoms and make an accurate diagnosis within a single visit to the doctor. One way to do this is through educational programmes that aim to increase awareness of cancer signs and symptoms among both clinicians and the general public. These programmes aim to catch potential cancer cases at the very first point of contact.
Other interventions, like guidelines, decision aids, and communication tools, also aim to support decision-making during the initial consultation. These tools are designed to help doctors identify potential cancer cases and make informed decisions about the appropriate next steps, but they aren’t used by all primary care professionals who may have reasons for not using or engaging with diagnostic decision aids or other tools. It can sometimes take multiple consultations for someone with non-specific cancer symptoms to be diagnosed.
How could a systems approach help with cancer diagnosis?
A systems approach looks at all the different components that work together to reach a cancer diagnosis within the wider healthcare environment. This includes healthcare professionals and organisations, technology, equipment, and workplace culture. Instead of trying to eliminate predictable errors in one area, interventions designed from this perspective embrace the complexity and unpredictability of clinical work.
A systems approach also takes a practical view of what can be expected from a single consultation, accepting that cancer patients may not be referred in the first instance, instead envisaging a system within which patients would be monitored during time between primary care visits. A systems approach incorporates a shared responsibility for monitoring patient progress among healthcare professionals rather than placing the burden solely on the primary care professional or the patient. This is especially important because patients may see multiple clinicians, including locum or trainee practitioners. By incorporating automated tracking systems, a systems approach can help ensure that no patient falls through the cracks and that necessary follow-up actions are taken promptly. People who don’t have or can’t use smartphones or devices can be supported with paper-based tools like information summary sheets, or patient navigators to help them.
Although implementing this sort of approach needs research and development, and might involve infrastructure changes, patients are likely to support it as many have said that disjointed and inflexible care are among their top concerns. Knowing that they are being monitored could be reassuring to patients at a difficult, uncertain time.
What are the downsides?
A systems approach takes some of the responsibility away from doctors which might lead to risk compensation – acting in a riskier way when you know interventions are in place. There’s also the danger of alert fatigue (we all get fed up with pop ups and constant email reminders). Limitations in technology and resources could be a barrier to change, while resistance to newer technology could prevent take up. Automating systems could potentially exclude some patients and may worsen existing healthcare inequalities.
This research highlights a need for investigation and investment into new and existing technologies that can support system safety and acknowledge the complex relationships between humans, technology, and organisational cultures.