ReSULTS MAY of SYmptoms. and DIAGnosis SURVEY

Transcription

1 ReSULTS of SYmptoms and DIAGnosis SURVEY MAY 2015

2 Introduction In December 2014 we launched an online survey asking patients, carers and family members to share with us the details of their diagnosis experience. Over 300 were received from all over the UK, and beyond. THANK YOU to everybody who took part. The results of the survey have already helped us respond to a National Institute for Health and Care Excellence (NICE) consultation on new referral guidelines for suspected cancer; have been used in campaigning materials, like our Diagnosis Manifesto for ; and will help us better campaign for change in the future. We did not set out to undertake a scientific, statistically precise survey. Our objective was to give people an opportunity to share information about the experience of themselves or a loved one being diagnosed with pancreatic cancer. So this survey is self-selecting in that people chose whether to respond or not and we did not target a representative sample of the UK s population. There is also a possibility two or more family members responded to answer the survey about the same loved one they lost, in which case there is a small chance of duplication. 2 PANCREATIC CANCER SYMPTOMS DIaGNOSIS SURVEY Where possible and where there is significant variation we have included a 4 nations breakdown of. On the face of it there appears to be significant regional variation, with patients in, and Northern Ireland more likely to have to visit their GPs 7 times or more before diagnosis than patients in, for instance. However, the small number of respondents from each of those countries needs to be taken into account and makes it difficult to draw accurate conclusions. This issue around small numbers of regional respondents holds true throughout the document. Responses we received from non-uk residents have not been included in our analysis as they would have skewed the picture for the UK, and where the occasional respondent replied to the survey twice, only the first of their replies has been used in producing this document. Despite these health warnings around the data, we believe that as so many people took the time and trouble to complete the survey it is only right that the results be made publically available. Moreover, the seem to tally with evidence from other studies available, as well as with what we hear through our work with patients and carers on a regular basis around the country. The results will help us campaign for change across the UK.

3 Executive Summary of Results e received 274 replies from W the UK and 2 from the Isle of Man. The five most common symptoms reported before diagnosis were: pain or discomfort in the tummy/ abdomen (reported by 55% of respondents); Unexpected weight loss (48%); Loss of appetite (47%); pain or discomfort in the back (45%); and skin or eyes went yellow/ jaundice (38%). 63% of respondents said they/ their family member had to visit their GP three times or more before diagnosis. 23% said they had to visit seven times or more. Significantly, answers to questions suggest that nearly 60% of patients would not have been referred for a CT scan based on the cluster of symptoms and age thresholds proposed in new draft National Institute for Health and Care Excellence (NICE) referral guidelines for suspected cancer. This is either because they did not have weight loss AND at least one of the symptoms selected as an alarm symptom by NICE, or if they did have weight loss and one of the other symptoms they were under the age threshold of 60 years old. This is extremely worrying and backs up our call for the draft guidelines to be amended, with age thresholds lowered or, ideally, scrapped and the range of symptoms included in the document expanded. 28% of patients were given their diagnosis in a bed/cubicle in a hospital ward with other patients nearby. 5% were given their diagnosis over the phone. 25% of patients had no-one with them e.g. a family member or friend - when given their diagnosis. 7% of respondents felt 3 the diagnosis was not communicated sensitively. 41% said it took three months or longer from first going to their GP with symptoms until they were diagnosed. 3

4 Section 1: About you/the patient We received over 300 to the survey, of which 274 respondents were from the UK, although not every respondent answered every question. We also received 2 replies from the Isle of Man which we have included in this analysis as patients there can receive specialist care in the UK. Most replies nearly four fifths came from family members who had lost a loved one to the disease, although were also provided by current patients and carers. Number of % of I was diagnosed with inoperable/locally advanced pancreatic cancer I was diagnosed with inoperable pancreatic cancer which had spread to another part of my body I am the family member/carer of someone currently diagnosed with pancreatic cancer Question option I was diagnosed with operable pancreatic cancer I am the family member/carer of someone who has died from pancreatic cancer Responses were received from all parts of the UK Northern Ireland 0% 10% 20% 4 PANCREATIC CANCER SYMPTOMS DIaGNOSIS SURVEY 30% 40% 50% 60% 70% 80% 90% 100%

5 Overall, were broadly in proportion with the relative size of each country, although replies received from were slightly under-representative compared to the population distribution of the UK, and those from Northern Ireland, and slightly over-representative. Question choice Number of % of 18 or under Country Number of % of % of country s total UK population (2011 census) or over Northern Ireland n/a Isle of Man It is worth noting that the proportion of to this survey from or about younger patients does not match the distribution found in official statistics. This anomaly is likely due to the self selecting nature of the survey and is worth bearing in mind when looking at the results of other questions. Age of patient at time of diagnosis 18 or under or over 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 5

6 Section 2: Symptoms The are placed in order of most commonly reported symptoms in the table below: The main health problems or symptoms that patients had before they were diagnosed with pancreatic cancer were: Question choice Loss of appetite Feeling sick (nausea) or vomiting/ regurgitating food Indigestion or heartburn Unexpected weight loss Extreme fatigue/tiredness Feeling unusually full after food Urine went dark in colour (like tea without milk Faeces went large, pale, oily and floating Pain or discomfort in tummy (abdomen) Pain or discomfort in back Skin or eyes went yellow (Jaundiced) Number of % of Pain or discomfort in tummy (abdomen) Unexpected weight loss Loss of appetite Pain or discomfort in back Skin or eyes went yellow (jaundiced) Extreme fatigue/tiredness Indigestion or heartburn Feeling sick (nausea) or vomiting/ regurgitating food Urine went dark in colour (like tea without milk) Faeces went large, pale, oily and floating Feeling unusually full after food Diarrhoea New onset of diabetes Constipation No symptoms or health problems at all Diarrhoea Constipation New onset of diabetes No symptoms or health problems 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Several respondents (8) also highlighted that itchy skin was a recurring symptom before diagnosis. Itchy skin could be a symptom associated with jaundice or it may be associated with some of the other symptoms of pancreatic cancer. As such, this symptom should have been included amongst the tick box options of the survey (it was omitted in error and could not be added after the survey went live). The fact that 8 respondents highlighted this independently in the freeform response box demonstrates this is an important alarm symptom that needs to be heeded by GPs. More information about common signs and symptoms can be found on our website. 6 PANCREATIC CANCER SYMPTOMS DIaGNOSIS SURVEY

7 Section 3: Diagnosis Before you/your family member were told you/they had pancreatic cancer, how many times did you/they see a GP about the health problem(s) or symptom(s) caused by the cancer? Only once Twice 3 or 4 times 5 or 6 times 7 or more times Don t know / Can t remember 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Regional breakdown of UK-wide NI 39 (14.4) 23 (11.7) 7 (22.6) 6 (23.1) 1 (7.7) 25 (9.2) 21 (10.7) 3 (9.7) 1 (3.9) 3 or 4 times 69 (25.5) 50 (25.5) 5 (16.1) 8 (30.8) 5 (38.5) 5 or 6 times 41 (15.1) 36 (18.4) 3 (9.7) 2 (15.4) 7 or more times 61 (22.5) 35 (17.9) 10 (32.3) 10 (38.5) 4 (30.1) Don t know/can t remember 36 (13.3) 31 (15.8) 3 (9.7) 1 (3.9) 1 (7.7) Number of visits to GP Only once Twice These answers support other evidence that a large percentage of pancreatic cancer patients have to visit their GPs on multiple occasions before being diagnosed. The 2014 English Cancer Patient Experience Survey (CPES), for example, reported that more than 40% of pancreatic cancer patients had to visit their GP 3 or more times, compared to just 25% of all cancer patients. Responses to our questionnaire clearly paint a worse picture than the CPES. 7

8 Section 3: Diagnosis How long was it from the time you/your family member first saw a GP or hospital doctor about your/their main symptoms and being told you/they had pancreatic cancer? Less than 2 weeks More than 2 weeks but less than 4 week More than 4 weeks but less than 3 months More than 3 months Don t know / Can t remember 0% 10% 20% 30% 40% 50% 60% 70% 80% Regional breakdown of UK-wide NI Less than 2 weeks 46 (16.8) 30 (15.2) 6 (18.8) 4 (14.8) 4 (30.8) More than two weeks but less than 4 weeks 41 (15.0) 31 (15.7) 6 (18.8) 3 (11.1) 1 (7.7) More than 4 weeks but less than 3 months 61 (22.3) 46 (23.4) 8 (25.0) 5 (18.5) 1 (7.7) 111 (40.5) 78 (39.6) 11 (34.4) 14 (51.6) 6 (46.2) 15 (5.5) 12 (6.1) 1 (3.1) 1 (3.7) 1 (7.7) Time before diagnosis made More than 3 months Don t know/can t remember Time taken to diagnose is largely a proxy for the number of GP visits. The proportion of patients 40% having to wait three months or more before diagnosis is extremely worrying as a lot can change in terms of disease progression over that period, with likely outcomes getting worse and treatment options fewer. 8 PANCREATIC CANCER SYMPTOMS DIaGNOSIS SURVEY Again, there is some regional variation, with patients in and Northern Ireland appearing to have to wait longer before being diagnosed.

9 How the patient was referred to hospital Question choice Referred by a GP (family doctor) Went (or were taken) directly to the accident and emergency (casualty) department at the hospital UK-wide NI 154 (64.2) 116 (66.7) 18 (66.7) 13 (61.9) 4 (30.8) 86 (35.8) 58 (33.3) 9 (33.3) 8 (38.1) 9 (69.2) Responses to our survey suggest that the method of referral seems to be broadly the same across the UK, apart from Northern Ireland where emergency admission seems to be twice as high as the UK average. This is at odds with published evidence from the National Cancer Intelligence Network (NCIN) whose Routes to Diagnosis Study indicated that almost half of pancreatic cancer patients were diagnosed via an emergency admission. However, our question is slightly broader. Included amongst the freeform comments received in answer to this question on referral route, two other important trends emerged. Firstly, 13 respondents said that they ended up using private medical care to get the scans they needed. This confirms what we hear all too often patients getting exasperated with repeat visits to GPs without their symptoms being diagnosed and deciding to pay for a CT scan themselves to get to the bottom of things. Secondly, six respondents explained that the patient was in hospital already for an unrelated condition when tests showed they had pancreatic cancer, showing the importance of hospital staff also being trained in identifying signs and symptoms of pancreatic cancer, not just GPs. 9

10 Section 4: Questions based around Draft NICE Referral Guidelines These following two questions were included in light of the National Institute for Health and Care Excellence (NICE) Draft Referral Guidelines for Suspected Cancer that are currently being developed. These will cover and also cover practice in and Northern Ireland. The Draft Guidelines included some welcome steps: for instance, for the first time a separate section was produced for pancreatic cancer symptoms; GPs are encouraged to refer patients showing certain clusters of symptoms for a CT scan; and an additional symptom of new onset diabetes was included. However, in other ways, the Draft Guidelines were not so good for pancreatic cancer patients and in fact gave cause for concern. Age thresholds were introduced, only beyond which the Guidelines suggest referrals are made, and the cluster of symptoms that would trigger a referral were not as broad as we wanted. For instance, only patients aged 60 or over who presented with weight loss combined with one or more symptom of diarrhoea, back pain, abdominal pain, nausea/vomiting, constipation, or new onset diabetes warrant a referral for a CT scan according to the Draft. Likewise an age-threshold of 40 was set for patients showing jaundice to be referred down a cancer pathway. These elements of the draft guidelines were contested in the joint written response made by ourselves and Pancreatic Cancer Action back in January. The given to our survey help reinforce our position, as they suggest that a high percentage of patients would not be covered by the limited symptoms and age thresholds contained in the Draft Guidelines. In fact, if GPs only followed the Guidelines as originally drafted, the to our survey suggest that five of the 114 patients presenting with jaundice would not have been referred via an urgent cancer pathway. Moreover, nearly 60% of patients would not have been referred for a CT scan under the cluster of symptoms route, as they either did not have weight loss AND at least one of the other symptoms chosen by NICE, or they did have those symptoms but were under the age threshold of 60 years old selected by NICE. The results to the questions were: Jaundice and age Number of % of I/my family member age 40 or over when they went to their GP with jaundice before being diagnosed with pancreatic cancer I/my family member did not have jaundice Question option I/my family member was under the age of 40 and went to their GP with jaundice before being diagnosed with pancreatic cancer 10 PANCREATIC CANCER SYMPTOMS DIaGNOSIS SURVEY

11 Cluster of specific symptoms and age Number of % of I/my family member was age 60 or over and went to their GP with the symptom of weight loss combined with one or more of the following symptoms -diarrhoea, back pain, abdominal pain, nausea/vomiting, constipation, new onset diabetes - before being diagnosed with pancreatic cancer I/my family member did not have weight loss combined with one or more of the following symptoms -diarrhoea, back pain, abdominal pain, nausea/vomiting, constipation, new onset diabetes - before being diagnosed with pancreatic cancer Question option I/my family member was under the age of 60 and went to their GP with the symptom of weight loss combined with one or more of the following symptoms -diarrhoea, back pain, abdominal pain, nausea/ vomiting, constipation, new onset diabetes - before being diagnosed with pancreatic cancer Of course, guidelines are just guidelines and GPs may still refer patients on for scans or other investigations if they see fit, based on their own knowledge, experience and intuition. However, as the answers to earlier survey questions have shown, too many patients are already returning to their GPs on a too frequent basis before finally being diagnosed. We need to see stronger referral guidelines than those currently drafted. We will use this data to back up the arguments already made in our written response to NICE, made jointly with Pancreatic Cancer Action. It gives us more ammunition to call for the draft guidelines to be changed including a lowering or preferably the removal altogether of the age thresholds in the current draft. For sake of clarity, introduced its own suspected cancer referral guidelines last year, which we broadly welcomed. They did not include symptom clusters or age thresholds, which is good, but were less specific about GPs referring patients for a CT scan. 11

12 Section 5: Communication of diagnosis Who broke the news to you/your family member that you/they were diagnosed with pancreatic cancer? Answers by region: UK-wide NI 29 (12.2) 22 (13.1) 5 (17.2) 1 (4.0) 1 (8.33) An emergency physician 19 (8.0) 11 (6.6) 3 (10.3) 2 (8.0) 2 (16.7) A specialist clinician (e.g. oncologist or surgeon) 174 (73.1) 121 (72.0) 21 (72.4) 21 (84.0) 9 (75.0) 16 (6.7) 14 (8.3) 1 (4.0) Question choice Your GP A Cancer Nurse Specialist Where/how was the news relayed to you/your family member? In a GP surgery In a private room/office off the hospital ward In a private ward in a hospital In a bed/cubicle in a hospital ward with other patients nearby Over the phone 0% 10% 12 PANCREATIC CANCER SYMPTOMS DIaGNOSIS SURVEY 20% 30% 40% 50% 60% 70% 80% 90% 100%

13 Regional breakdown of Question choice UK-wide NI In a GP Surgery 20 (8.1) 13 (7.3) 5 (16.7) 1 (4.4) 1 (8.3) 124 (50.2) 90 (50.6) 16 (53.3) 8 (34.8) 9 (75.0) 23 (9.3) 15 (8.4) 3 (10.0) 5 (21.7) 68 (27.5) 49 (27.5) 5 (16.7) 9 (39.1) 2 (16.7) 12 (4.9) 11 (6.2) 1 (3.3) In a private room/office off the hospital ward In a private ward in a hospital In a bed/cubicle in a hospital ward with other patients nearby Over the phone A patient s and their family s privacy is extremely important when a diagnosis is given and it is disappointing that so many patients are still being given a diagnosis on a general ward with just flimsy curtains between them and other patients. Moreover, it is very disappointing to see that some patients are being given their diagnosis over the phone, although this seems to be confined largely to according to the survey. Who was with you/your family member when the diagnosis was communicated? Answers by region: UK-wide NI 182 (71.9) 129 (71.3) 24 (75.0) 17 (68.0) 9 (81.8) A friend 4 (1.6) 4 (2.2) A Cancer Nurse Specialist 5 (2.0) 5 (2.8) 62 (24.5) 43 (23.8) 8 (25.0) 8 (32.0) 2 (18.2) Question choice A family member No-one In some cases respondents told us they chose to hear the results on their own and that is completely understandable. However, other respondents made clear in the comments section that they or their family member would have wanted someone with them but this choice was not offered. Given that NHS breaking bad news guidance specifies that patients should always be given the chance to have a relative or friend with them when the diagnosis is given, it is again disappointing to see that nearly a quarter of our respondents said they/their family member was alone when they were told their diagnosis. 13

14 Section 5: Communication of diagnosis Were you/your family member offered support/time to digest the news after the diagnosis was communicated? Answers by region: UK-wide NI Yes 116 (47.5) 87 (50.0) 12 (41.4) 11 (45.8) 6 (46.2) No 128 (52.5) 87 (50.0) 17 (58.6) 13 (54.2) 7 (53.9) Question choice Do you feel the diagnosis was communicated to you/your family member sensitively? Answers by region: UK-wide NI Yes 158 (63.0) 115 (64.6) 20 (66.7) 15 (57.7) 6 (50.0) No 93 (37.0) 63 (35.4) 10 (33.3) 11 (42.3) 6 (50.0) Question choice Over a third of survey respondents said they did not feel the diagnosis was communicated sensitively, which is a worryingly high figure. It is clear that more needs to be done to improve how patients and families are informed of their diagnosis. 14 PANCREATIC CANCER SYMPTOMS DIaGNOSIS SURVEY

15 Conclusion Overall, the results of the survey highlight many of the problems within the current system and help demonstrate the need for change. The message that emerges is clear: much more needs to be done to ensure earlier diagnosis of the disease and to prevent patients having to make so many repeat visits to GPs before being diagnosed. There is also still a need to see greater consideration of patients throughout the whole diagnostic pathway, especially in ensuring they are told their diagnosis is an appropriate manner and in a location that offers privacy. We will continue to campaign for those changes as a routine part of our work, in our efforts to improve pancreatic cancer outcomes and care across the UK. 15

16 Visit us online at: Follow us on Find us on Facebook : Talk to others in our Forum: Pancreatic Cancer UK Support Line: Pancreatic Cancer UK 2nd floor, Camelford House, 89 Albert Embankment, London, SE1 7TW Registered Charity Number