Around 10,000 individuals in the UK are estimated to be diagnosed with pancreatic cancer every year, with this figure set to increase over subsequent years. Statistics published by Cancer Research UK show the incidence of this disease has risen by 9% in the last decade and anticipate it will rise a further 6% between 2014 and 2035.
This is of particular concern because although it is currently the 11th most common cancer in the UK, it is the fifth most common cause of cancer death.
Delays in diagnosing pancreatic cancer
A diagnosis of pancreatic cancer can be devastating for patients and their families because of the poor prognosis associated with it, but this may be exacerbated if there was a delay in diagnosing the disease. Missing a diagnosis can also have a negative impact on the clinicians involved, both emotionally and medico-legally.
A review of MDU cases reveal that between November 2012 and November 2017, we supported members with 165 incidents relating to a diagnosis of pancreatic cancer. In keeping with pancreatic cancer's poor prognosis, a significant proportion of these involved relatives of deceased patients pursuing claims and complaints on their behalf. Similarly, many cases that began with a patient complaint later had to be progressed by relatives due to the patient's ill health or because they had died.
By far the most common cause for a complaint or claim was a delayed diagnosis of pancreatic cancer. This is not surprising given that the symptoms of the disease can be vague and intermittent to begin with.
NICE guidelines on recognition and referral for suspected cancer include the following advice to help GPs recognise the disease and understand when a referral might be necessary:
1.2.4 Refer people using a suspected cancer pathway referral (for an appointment within 2 weeks) for pancreatic cancer if they are aged 40 and over and have jaundice. [New 2015]
1.2.5 Consider an urgent direct access CT scan (to be performed within 2 weeks), or an urgent ultrasound scan if CT is not available, to assess for pancreatic cancer in people aged 60 and over with weight loss and any of the following:
- back pain
- abdominal pain
- new‑onset diabetes.
Reasons for delayed diagnosis
From reviewing our data there were several themes identified that appeared to contribute to a delayed diagnosis.
- Clinicians believing symptoms were due to patients' pre-existing conditions such as irritable bowel syndrome or chronic back pain, rather than indicative of new pathology.
- A failure to weigh patients who reported reduced appetite or weight loss, meaning progressive and significant weight loss was overlooked.
- When doctors were faced with an unclear diagnosis or vague symptoms, patients often were sent for blood tests then endoscopies which caused delays in direct access CT scans being arranged (as recommended in the NICE guidelines).
- Confused clinical decision making, usually due to patients reporting vague or unusual symptoms such as burning back pain or fluffy stools rather than classic steatorrhea.
- Poor continuity of care and communication with several GPs being involved in the patient's care in the run up to diagnosis.
Reducing the risk of missing pancreatic cancer
Pancreatic cancer is notoriously hard to diagnose, but early diagnosis is critical given that the later the stage at diagnosis, the less chance that successful treatment will be possible.
While making the diagnosis can be difficult due to vague symptoms presenting in ways that can indicate several other disease processes, there are steps that doctors can take to minimise the risk of a delayed diagnosis.
Ensure you are up to date with the recommended guidance
As outlined above, NICE has published guidelines on which patients should be referred under a two week wait pathway and which may need an urgent direct access CT scan.
Discuss your management plan with the patient
Clear communication between a doctor and patient can reduce the risk of a delayed or missed diagnosis. Once you have formulated an appropriate management plan, you should discuss this and agree the next steps with the patient. The plan would include any proposed investigations, timescales for these, how results will be communicated and what the patient needs to follow up, if anything.
Your discussion should also include safety netting advice, which tells the patient when to return if their symptoms do not improve or worsen. This information should also be recorded in the patient's record.
Follow up investigations and make referrals promptly
If you decide the patient needs to be referred for tests or to a specialist, it is important this is done quickly and efficiently. Ensure you have systems in place prompting you to write referral letters as soon as possible after a consultation.
It is also advisable to make sure there are systems in place for tracking test results, so you can follow up if the results do not arrive in the expected timescales. Similarly, it is important to have a system in place for communicating test results to patients so that any serious concerns can be promptly addressed.
Keep accurate records
Taking a comprehensive and relevant clinical history is key to making an accurate diagnosis. This should be carefully documented in the patient's records along with the details of the physical examination you do, including both positive and negative findings.
The management plan should also be outlined clearly. This point is particularly relevant in trying to mitigate problems when continuity of care may be lacking.
By far the most common cause for a complaint or claim was a delayed diagnosis of pancreatic cancer.
The following case is fictional and based on the types of cases we have supported members with.
A 65-year old woman with long term irritable bowel syndrome (IBS) saw her GP with worsening bowel symptoms and new onset upper back pain. She couldn't recall a specific incident that had triggered the back pain, but did explain that she had been gardening more during the springtime.
The GP prescribed her analgesia and gave lifestyle advice about her IBS symptoms. Over the next six months the patient was seen with worsening symptoms by several different GPs, who all felt that her symptoms were due to an exacerbation of her IBS and musculoskeletal back pain. Important positives such as weight loss and early satiety, as well as relevant negatives including lack of blood in her stools, were documented in the notes. All her blood tests were normal.
Eventually she was sent for an upper GI endoscopy which was normal. This was followed up with a lower GI endoscopy which also showed no abnormalities. Eight months on from her first presentation to the GP, she was diagnosed with Stage 4 pancreatic cancer when she underwent a routine CT scan. She sadly died within six weeks of the diagnosis.
Her family wrote a letter of complaint about the delayed diagnosis. In particular the family complained about the apparent failure to take into account her reports of weight loss, failure to reconsider the original diagnosis when symptoms persisted, failure to consider pancreatic cancer as a diagnosis, and failure to arrange appropriate investigations promptly.
The practice responded to each of the concerns raised and apologised for the delay. They also offered to meet with the family to talk through the case. The family refused and decided to sue the GPs involved. The case was eventually settled, as the MDU-appointed expert considered that the delay in diagnosis contributed to reduced life expectancy.