Turn it purple for Pancreatic Cancer Awareness Month
By Hilary Brown, Alistair Hewison and Keith Roberts
You might notice a number of buildings turning purple this month - that’s because purple is the colour associated with pancreatic cancer and lighting up iconic landmarks, including the Blackpool Tower and Edinburgh Castle is a striking way to raise awareness this November.
Increased awareness is needed because outcomes for, and treatment of patients with pancreatic cancer, desperately require improvement. It is one of the cancers with a rising mortality rate in both sexes - in the UK, almost 10,000 people are newly diagnosed with pancreatic cancer each year and worldwide the number is 338,000. It is a devastating disease - for those with Stage 4 cancer, the median survival rate is between two and six months and less than 7% of those who survive live beyond five years. While much progress has been made in the survival rates of other cancers, with many cancers now being regarded as long term conditions because of this improvement, the survival rates for pancreatic cancer have barely changed in the last three decades.
One fundamental reason for such poor outcomes for pancreatic cancer is that an accurate diagnosis generally comes too late. Symptoms can be subtle and can be mistaken for a range of other conditions. And while pancreatic cancer is not considered a rare cancer, it is less prevalent than other cancers - a GP may only see one patient with pancreatic cancer every five to ten years. By the time a diagnosis is made, the cancer is often well advanced and treatment options limited. Surgery offers the best chance of survival but is an option for less than 10%, as a result of the advancement of the disease
Variation in care
A prospective national audit (RICOCHET), to be published next year, is expected to show widespread variation in care with many patients not receiving what is widely considered to be best care. For example, NICE guidance includes a recommendation that patients with jaundice proceed directly to surgery, avoiding risks associated with temporary treatment of jaundice, and yet most patients continue to be exposed to a potentially harmful and unpleasant procedure that delays treatment. Practitioners are also recommended to provide pancreatic enzyme replacement therapy to these patients; optimising nutrition is essential as it improves quality of life, maintains health and ability to undergo treatments, and data suggests it also improves survival. However, again many patients do not receive this treatment.
Funding for pancreatic cancer research is increasing which is a genuine cause for celebration. Exciting and potentially hugely significant research into new treatments is underway, such as the immunotherapy work being undertaken at Bart’s Cancer Institute under Pancreatic Cancer UK’s Grand Challenge Award, which aims to ‘educate cells’ in the immune system to recognise and destroy pancreatic cancer cells.
However research into new treatments will only bring real patient benefit and improve outcomes, if the service is able to implement these new treatments rapidly. Given the emerging results from the RICOCHET audit, it is clear there is a significant ‘implementation gap’ in the care of patients with pancreatic cancer. This comes as no real surprise, as the ‘implementation gap’ – the chasm between evidence and practice, or policy or practice, is evident across the NHS and is the subject of a significant body of evidence and subsequent theoretical frameworks, which offer solutions as to how best to overcome this deficit.
Developing a comprehensive improvement programme
This indicates that there is a need for a comprehensive, multidisciplinary programme to improve pathways and treatment for people with pancreatic cancer underpinned by empirical research into how best to overcome the implementation gap and make change happen. The programme would ultimately aim to ensure that healthcare professionals and patients become dual agents of change by focusing on the three conditions necessary to effect behaviour change - motivation, capability and opportunity – known as the COM-B system. For example, what would it take for a Cancer Nurse Specialist or an Oncologist to instigate enzyme replacement therapy for a patient attending an outpatient clinic, where this isn’t currently happening?
Similarly, what is necessary to ensure that a jaundiced patient with an operable cancer isn’t subject to unnecessary biliary drainage? Equipping the patient and their carers with the knowledge that would enable them to question this as the most appropriate strategy for their management and request a referral on to a fast track surgery pathway, could be part of an overall strategy for service change.
Clearly, the first steps in developing such a programme are to define what best care is through seeking expert clinical, academic and service user opinion. Where it is unclear what constitutes best care, the programme would seek to define topics for research. The programme would need the support of clinicians and researchers, patients and their advocates, cancer charities, policy makers, and politicians to give the required changes the maximum chance of success. Such a coalition of the willing could foster a culture change through collaborative working and research that will benefit the NHS and patients for years to come.
Other countries are grappling with the same challenges that treating pancreatic cancer raises and are prioritising research into the disease. In the EU, Pancreatic Cancer Europe is also actively working to reverse the trend of lack of improvement in survival for pancreatic cancer patients by increasing awareness among clinicians and the public, supporting research into the disease, collecting consistent and standardised data and lobbying for greater political support. Brexit leaves important research collaborations with EU colleagues vulnerable, so investing in a UK-based programme that seeks to robustly address the implementation gap is essential, if UK patients are not to be left behind yet again in the race to improve cancer treatment and outcomes.
If you are a clinician or academic working in the field of pancreatic cancer and are interested in the concept of a comprehensive, multidisciplinary programme to improve pathways and treatment for people with pancreatic cancer underpinned by empirical research, please contact the authors.