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Some patients with suspected cancer fail to attend referral appointments – we found out why

If a patient has signs or symptoms of cancer, a GP would refer him or her to a specialist. You might think every patient suspected of having cancer would be sure not to miss this visit to an oncologist, but our latest research shows that more than 5% of patients cancel or don’t turn up for these crucial appointments. An appointment could confirm cancer, but equally, it could rule it out.

We found that patients who didn’t attend these appointments (let’s call them non-attending patients) were less likely than attending patients to be diagnosed with cancer. (All cancers in the UK are registered, which is how we know about cancers in patients who attended the initial appointment and later in those who didn’t.) But non-attending patients who were eventually diagnosed with cancer were 12% more likely to die within a year of receiving a diagnosis.

Non-attending patients tended to have more advanced disease when their cancer was confirmed, suggesting they had been slower to make the GP appointment that resulted in a referral to a specialist.

Better outcomes

Cancer outcomes in the UK have improved greatly over recent decades. People with cancer now live longer and have a greater chance of the disease being successfully treated. These improvements are because treatments are better and cancers are being found and diagnosed sooner.

In the UK, quicker cancer diagnoses have happened partly through shortening the time between patients’ first report of symptoms and the diagnosis being made. In 2000, the NHS introduced a two-week-wait policy which, as the name suggests, aimed to ensure that people who may have cancer are seen by a specialist within two weeks of a GP referral.

The UK’s National Institute for Health and Care Excellence (NICE) recently changed the two-week-wait policy, lowering the threshold at which a GP should refer a patient to a cancer specialist. For example, under the new guidelines, GPs should now refer patients aged over 40 with unexplained weight loss and abdominal pain, thereby increasing the referral of more patients with non-specific symptoms that could be cancer.

In England there are now 1.9 million two-week-wait referrals each year and 48% of all cancers in the UK are diagnosed through this route. Most other cancers are identified through emergency hospital admission or screening.

Lowering referral thresholds has identified more cancers - the planned outcome – but it has also reduced the chance that a referred patient will actually have cancer. The rate of cancer diagnosis is 9% among patients referred under two week wait, which means that GP referrals are used to rule out cancer in most patients.

Lowering the cancer referral threshold creates two problems. First, more patients having a period of worry between GP referral and the hospital appointment. Second, for GPs, the difficult task of communicating two pieces of potentially conflicting information to patients. One, that the referral is important, and two, that most referred patients will not have cancer.

Our research into patients who don’t attend their hospital appointment comprised a statistical study of more than 100,000 patients who’d received an urgent referral for suspected cancer, and an interview study with GPs and with patients who had cancelled or not attended their urgent referral appointment.

Reasons for not attending

Our statistical analysis showed that people who were least likely to attend their hospital appointment were men, the very young and the very old, patients with particular types of suspected cancer (especially gastro-intestinal cancer), people living far from the hospital, and people from poorer parts of the city.

The interviews revealed several reasons for not attending appointments. They included patients having several health problems or many other competing demands, patients finding it difficult to navigate the appointment system, being afraid of the diagnosis, and expecting diagnostic tests to be unpleasant or embarrassing. And, surprising as it may seem, some people didn’t see a possible cancer diagnosis as the most important thing in their lives.

All cancers, except for melanoma, are more common in lower-income groups in the UK. People from higher income groups also live longer after cancer is diagnosed. Poverty affects health behaviour in different ways, both directly (for example, not having enough money to pay for a prescription) and indirectly (for example, valuing your life less than other people’s). Many practical, financial and health demands on lower-income patients can influence how important they see the hospital appointment to be.

Health literacy may also explain non-attendance. Health literacy is a person’s ability to find, understand and use health information and healthcare systems. It has become highly influential over the past 20 years. For example, health literacy is a predictor of life expectancy in older people.

Health literacy is key. Speedkingz/Shutterstock

Our research suggests it may play an important role in urgent referral appointments, with patients with lower levels of health literacy delaying seeing their GP about their symptoms, or finding it difficult to use the hospital appointments system, or not understanding the importance of the urgent referral hospital appointment.

Patients failing to attend urgent referral appointments have caused great concern among GPs and hospital staff, partly about the cost of wasted staff time, but also because of the health of these patients, who had symptoms when the GP referred them.

We need to find solutions to this important problem, such as GPs ensuring that patients understand the appointments system and the importance of attending, and reassuring patients about possible diagnostic tests. Contacting and re-booking non-attenders must also be a priority.

A greater challenge is to ensure that patients don’t delay reporting symptoms to their GP. Our research suggests that patients who delay may be at greater risk of not attending their hospital appointment, so GPs could stress the importance of attendance in those patients especially.

Correction. An earlier version of this article stated that “non-attending patients who were eventually diagnosed with cancer were 12% more likely to die from cancer within a year of receiving a diagnosis”. It should have read: “But non-attending patients who were eventually diagnosed with cancer were 12% more likely to die within a year of receiving a diagnosis.”

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