We’re funding the world’s largest prospective symptoms study for pancreatic cancer

Symptoms - Abdominal pain

Pancreatic Cancer Action (PCA) is to fund researchers at the University of Cambridge to identify the key symptoms associated with pancreatic cancer in order to inform consumer awareness campaigns and underpin the development of general-practice-based interventions aimed at earlier diagnosis of pancreatic cancer.

Pancreatic cancer is the UK’s fifth deadliest cancer with 90 percent of all cases being diagnosed too late for potentially curative surgery to be an option. It has only a three per cent five-year survival rate, and this has not improved in over 40 years.

The SYMPTOM Study, set in Cambridge and Durham is the largest worldwide prospective cohort study of people with symptoms suggestive of pancreatic cancer and, using both quantitative and qualitative methods, the researchers hope to be able to identify the clinical demographic and psychosocial factors associated with later presentation to doctors and whether these delays are associated with stage at diagnosis.

The SYMPTOM Study forms part of the wider ‘Discovery Programme’, which is funded by the National Institute for Health Research (NIHR), to look into lung and colorectal cancers and for which recruitment is virtually complete. The PCA funding specifically for pancreatic cancer will enable the pancreatic cancer arm to recruit sufficient participants into the study.

The study will question patients about their pancreatic cancer symptoms and about how long it took them to seek healthcare. It also includes socio-demographic items (age, gender, employment status, education, ethnicity, household members, co-morbidities, smoking and family history). Consent is sought to access both GP and hospital records to identify the diagnostic pathway including the time to diagnosis from first presentation of symptoms and the stage of cancer at diagnosis.

A sample of patients (with and without pancreatic cancer) will be interviewed soon after diagnosis to gain an in-depth understanding of factors such as how initial symptoms were noticed, risk perceptions, understanding of risk, sources of information, the language used to describe symptoms over time, and prompts to encourage people to seek help for their symptoms in a timely way.

Dr Fiona Walter, clinical lecturer in General Practice, University of Cambridge and leading the SYMPTOM Study said, “We are delighted that Pancreatic Cancer Action will be funding this study as, without their help, we may not have been able to recruit enough participants into the pancreatic cancer arm. We hope the findings will help produce the evidence on which future consumer awareness campaigns and GP-based early diagnosis initiatives can be based.”

Ali Stunt, Chief Executive of Pancreatic Cancer Action explains, “The biggest problem with the diagnosis of pancreatic cancer is that there is no one clear indicator of the illness. There are, however, a few key classic presentations and there are also many clusters of symptoms that should give rise to suspicion leading to referral and more in depth tests.”

Ali continues, “We hope that this study will contribute to improving survival rates for this grim disease through earlier diagnosis leading to the possibility of surgery.  I am myself a survivor of this aggressive cancer and believe early diagnosis almost certainly saved my life. I am determined more people will have the same lucky outcome as I did.”

SYMPTOMS study website