Topline Report of Pancreatic Cancer Survey Prepared for Pancreatic Cancer Action 17th November 2015

Executive Summary The Key Points of The Research Although two thirds of GPs stated they had some experience in recognising pancreatic cancer symptoms, only 3% stated they were fully confident and informed Pancreatic cancer was deemed to be more difficult to diagnose than other types of cancer The level of awareness of NICE guidelines for referral of pancreatic patients was quite low Smoking was deemed the main risk factor that could be mitigated with age being considered the main risk factor overall. The main barrier to diagnosis was deemed to be the difficulty in recognising pancreatic cancer symptoms The main ways to overcome barriers was seen as having better access to diagnostic testing as well as better awareness of symptoms from the public and GPs. With pancreatic cancer being such a virulent disease, some GPs (31%) were still unsure how much this would affect survival rates Patients needed to be made more aware of symptoms and present themselves sooner. They agreed that earlier presentation and recognition of symptoms would lead to earlier diagnosis

Executive Summary The Key Points of The Research GPs felt it was very important to be able to refer quickly for symptoms that were not specific, but seemingly serious. They agreed that earlier recognition would lead to earlier diagnosis. There didn’t appear to be great issues in terms of primary and secondary care interaction, however only 29% of GPs felt that CT-scans were easy to arrange. It is worth noting that 35% of GPs stated that they had direct referral/access to CT Scans A certain amount (up to 50%) of CT-scans appeared to be arranged by secondary care The main difficulties were not having direct access to CT-scans and the need to refer for these. Other reasons including having to justify the need to request a scan 4% of GPs had completed Pancreatic Cancer Action's e-learning modules on diagnosing pancreatic cancer either on the RCGP or BMJ websites

Background and Objectives The Premise Pancreatic cancer is currently the 5th biggest killing cancer in the UK. It is expected that it will move to 4th position in the next 15 years, overtaking breast cancer in terms of mortality rates Primary care professionals are under increasing pressure to diagnose cancer earlier. For doctors to diagnose pancreatic cancer earlier, it is essential that they have the tools and knowledge to help them to do this. The premise is that GPs need to have a greater knowledge of particular red flag symptoms relating to pancreatic cancer to allow earlier investigation and quicker referral Currently the majority of pancreatic cancer patients are being diagnosed at a late stage of the disease (often in A&E), thus it is imperative that GPs and primary care professionals are able to recognise and diagnose pancreatic cancer in the early stages. It is likely that early diagnosis is possible with both knowledge of the signs and symptoms of pancreatic cancer, and effective tools to record and monitor patients along with quicker access to CT scans

Background and Objectives The Objectives Research Now was commissioned by Pancreatic Cancer Action to run a survey with 400 GPs in order to investigate the following areas: The current level of understanding among GPs of pancreatic cancer as well of its early signs and symptoms The level of belief that early recognition of symptoms by primary care providers will lead to earlier diagnosis How comfortable or informed were GPs in terms of recognising pancreatic cancer symptoms The main symptoms (including combinations) which should lead to initiating testing What GPs believe to be the main risk factors for pancreatic cancer What are perceived to be the main barriers to diagnosing pancreatic cancer for GPs The factors that will have the most impact in supporting GPs to diagnose pancreatic cancer more effectively What GPs believe patients should do to take more responsibility for their health How GPs comprehend and adopt NICE guidelines for referring suspected pancreatic cancer patients The frequency of referrals as well as the frequency, time frame and ease of ordering CT Scans from a GP’s perspective The survey took place between the 19/10/2015 and 27/10/2015

Key Findings

Confident and Informed Key Findings The Background 74% of the GPs who took part had been in practice for between 10 and 29 years, with an average of 47, so can be considered experienced in dealing and recognising symptoms for a variety of diseases. Based on the last 5 years, the prevalence of pancreatic cancer amongst their patient base was deemed to be on average 5.7%. There were slightly higher incidences in London The majority of the GPs stated they had some experience in recognising pancreatic cancer symptoms However only a limited number of GPs felt fully confident that they had sufficient knowledge to recognise pancreatic cancer symptoms 28% of GPs felt they were not confident nor informed enough to recognise pancreatic cancer symptoms, with 25% being neutral. Even with 7% of GPs stating they were very experienced in recognising symptoms, only 3% of GPs overall felt they were they were fully confident and informed in terms of recognising these symptoms Regional variances seem to indicate that GPs in the Southwest felt they were better informed and confident compared to colleagues in other parts of the UK. London, the Southeast, Northwest and Scotland had better levels of confidence and information compared to those in Northern Ireland and the Northeast Level of Experience Confident and Informed No experience 1 % Lacking confidence 28% Limited experience 27 % Neither nor 25% Some experience 65 % Some degree of confidence 47% Very experienced 7 %

Key Findings The Background 90% of GPs felt that pancreatic cancer was more difficult to diagnose compared to other forms of cancer, with 38% stating it was much more difficult Do you feel pancreatic cancer is more or less difficult to diagnose compared to other types of cancer? Less difficult 1 % The same 9 % More difficult 52 % Much more difficult 38 % The large majority (77%) stated their practice had made between on average being between 7 and 8 referrals for pancreatic cancer in the last 12 months The level of awareness of NICE guidelines for referring suspected pancreatic cancer patients can be deemed quite low with only 3% stating they were fully informed How aware are you of NICE guidelines for referring suspected pancreatic cancer patients?

Key Findings The Risk Factors Age was deemed to be the main risk factor overall, however it could be considered a “given” as with most other diseases. Smoking was the main risk factor that could mitigated. On average it was believed that 27% of pancreatic cancer cases were attributable to smoking The main risk factors for pancreatic cancer 55% of GPs agreed that new 2015 NICE guidelines for suspected cancer included new-onset diabetes as a symptom for pancreatic cancer. 43% weren’t aware of this fact The other risk factor was principally alcohol Chart based on the number of main risk factor mentions. Base: 400

Key Findings Symptoms The main symptom on its own which would trigger tests for pancreatic cancer including pain (214 mentions) (mainly abdominal pain) and Jaundice (212 mentions). serious weight loss (96) on its own was usually a warning sign. The most common combination of symptoms which would trigger tests for pancreatic cancer included weight loss (316 mentions) with pain (281) (abdominal 189, back pain 69) and jaundice (229) Diabetes was rarely mentioned as a main symptom (6), but new onset of diabetes was mentioned 31 times in combination, which was less frequent than vomiting (33). Bloating was mentioned 28 times in combination

Key Findings The Barriers The main barrier to diagnosis was due to the symptoms of pancreatic cancer not being easy to recognise. Late presentation by patients due to their lack of awareness exacerbated the situation The 5 main barriers to diagnosing pancreatic cancer Lack of early testing protocols and doctor not comfortable or informed in pancreatic cancer diagnosis were often mentioned as important barriers Other barriers spontaneously mentioned centred around late presentation and delays Chart based on the number of main barrier mentions. Base: 400

Key Findings Overcoming Barriers Although GPs felt that better access to diagnostic testing would help improve the situation, it was the level of public symptom awareness leading to patients presenting themselves sooner, as well as better understanding by GPs that would greatly improve patient prognosis. Referral guidelines also needed to be clearer, however there didn’t appear to be any issues in terms of primary and secondary care interaction The issue of in-house CT scanning capabilities was not deemed to have a major impact in terms of improving outcomes. Perhaps most GPs felt that their practices would not be able to support such capabilities although 35% had direct access to CT-scans/EUS in their practice/clinic 86% of GPs denied delaying referrals for a CT scan on the grounds of cost What do you think will have the most impact in supporting GPs to diagnose pancreatic cancer more effectively? 38% stated that they been refused tests for their patients in the past 12 months for all diseases Better access to diagnostic tests 90 Symptoms awareness (public) 75 Improved or clearer referral guidelines 65 Better education/information for GP 56 Symptoms awareness (GPs) 45 Patients more proactive in visiting the GP sooner 41 In-house CT scans 21 Improve speed of referrals to secondary care 4 Closer relationships with secondary care 3 Figures based on the number of main mentions. Base: 400

Key Findings Overcoming Barriers The issues were not just with GPs or due delayed diagnostics. Patients becoming more aware and taking on responsibility were key in order to enable earlier diagnosis and better disease management GPs believed that being better informed on symptoms as well as visiting a GP sooner were the main areas to improve from a patient point of view What should a patient do to take more responsibility for their health? Figures based on the number of main mentions. Base: 400

Key Findings Early recognition and quick referral GPs felt it was imperative to be able to refer quickly for a non-specific but seemingly serious symptom. They agreed that earlier recognition would lead to earlier diagnosis However 31% were unsure that this would dramatically improve survival rates GPs were asked if they agreed or disagreed with the following statements Unsure 24% Unsure 31% Unsure 17%

Key Findings CT-Scans/EUS GPs stated, on average, that it was somewhat to moderately difficult to arrange for CT-scans with London appearing to experience the most difficulty It appears that when CT-scans were arranged externally, in up to 50% of cases these would be organised by secondary care . This figure assumes that the 35% who said they had CT –scans capabilities would rarely have these done externally It was stated that it took an average of 23 days with nationally 33% of tests being arranged at 14 days. There were great regional variances: In The Northeast 62% of tests were at 14 days, while In Wales 56% of tests were arranged at 28 days It then took on average 11 days to get the results back. Again there were major differences between the regions: 33% of results were made available in 1 day in Northern Ireland, in London 41% were at available at 1 week How easy is it to access CT-scans/EUS ? Extremely difficult 18% Somewhat difficult 28% Neither difficult or easy 24% Quite easy 25% Very easy 4%

Key Findings CT-Scans/EUS The main difficulty encountered by GPS for requesting rapid CT-scans was that they often had to refer to secondary to arrange for these. Although direct access was sometimes precluded, other issues encountered included needing to justify the request Requests being refused with the validity of the request assessed by radiologists. Waiting times were also sometimes deemed to long. “There is always waiting time, sometimes they are not convinced with my reasoning for CT and request a referral 1st to a secondary hospital or a specialist who then can request such CT for such diagnosis…” “GPs are discouraged from requesting them and we have little training in what action is necessary from the report…” “Have to get consent of consultant radiologist. vagueness of symptoms can make it difficult to justify…” “Sometimes make request and despite clear reasons it gets questioned - and that delay in trying to talk to someone ( who invariably agrees to do it - despite the same information being provided) puts a delay in…” “Just need to put forward a good clinical case for pancreatic protocol CT to radiologist, but sometimes they will ask GP to refer 2 week-wait to gastroenterology instead…” “Can only be accessed for certain indications and can be helpful if negative but actually cause more delays if positive as they are not part of a 2 week rule pathway…” “ A request has to have enough clinical reason to be accepted…”