Provenance of the ‘bowel symptom checker’
This symptom checker was funded by Lynn Faulds Woods’ Bowel Cancer Charity who also helped to design and edit it including the sections on ‘More on bowel symptoms’, ‘Treatment of bowel symptoms’, ‘Bowel diseases and tests’ and ‘Helpful videos’.
The checker was tested by a UCL student for her MSc who found that the checker was effective (See Below).
Lynn arranged the launch of the checker in the Atlee Room at the House of Lords on 12 November 2011.
It provided the first evidence-based online advice for people in the community on the safe management and simple treatment of their bowel symptoms and when they should see their GP if their symptoms do not resolve.
In 2012 the council of the association of bowel specialists, ACPGBI discussed it and agreed they should badge the checker and in 2014 put a link to it on their website.
In 2013 the adoption of the checker by NHS Choices put it on course to become the standard way people get information on these common symptoms. The checker had 400,000 completed uses a year when on NHS Choices and was its second most popular symptom checker.
The current online checker generates an ePR of the patients symptoms and the advice given by the checker which can be printed or emailed to their GP.
AI is rapidly becoming the way people in the community first obtain advice on their medical problems and this could greatly reduce the numbers of patients seeing their GP and being referred and investigated in hospital for trivial self-limiting symptoms.
Recent Public Awareness Campaigns have not reduced the long delays in some patients seeing their GP. Nearly 20% of cancer patients still have symptoms for over 6 months before seeing their GP and 10% over a year. This could be significantly reduced if they visited the symptom checker.
The ‘Symptom Iceberg’ described 50 years ago emphasises the fact that most people with symptoms, who are otherwise well and whose symptoms get better, never seek medical advice and are hidden from doctors like the seven eighths of an iceberg below the water. If NHS health policies ignore this simple fact finite NHS resources will, like the Titanic be overwhelmed and the diagnosis and treatments of patients with serious diseases will be delayed. On line symptom checkers could help people in the community to continue to self-manage their symptoms more safely.
It is essential that advice on the management bowel symptoms in the community is evidence based and that time honoured treat watch and wait diagnostic strategies with safety netting are employed to ensure people having serious bowel conditions are still promptly referred for investigation and that all people with symptoms that persist or recur after stopping simple treatments see their GP for a simple examination and blood test and further advice on how their symptoms should be managed and if neccessary referral to a routine hospital clinic.
The checker could also be used to determine when people with bowel symptoms might benefit from a Faecal Immunoglobulin test (FIT)
The checker is now based on extensive data collected prospectively over 30 years from over 35,000 patients in primary and secondary care (See References). This data was collected on a proforma after a systematic and structured history and examination and blood test for iron deficiency anaemia in primary and secondary care in Portsmouth and Petersfield.
These studies show the way bowel cancer presents is virtually the same in primary and secondary care with 95% of patients presenting one of three symptom combinations. It is important to define the nature of the change in bowel habit in terms of its frequency and consistency, not as constipation or diarrhoea, whether or not rectal bleeding is associated with pile symptoms and to establish symptoms are persistent. The small number of bowel cancer presenting with abdominal pain as a single symptom this is usually provoked by eating and or associated with significant weight loss.
The data used to create the symptom checker were also used in 2000 to develop of the first NHS referral criteria to guide GPs on which patients merited referral to the new 2-week fast track hospital clinics which were endorsed by NICE in 2005.
The GP referral criteria in 2000 were developed by a drafting committee and reviewed by professional organisations before release:
1. Drafting Committee
Mr. M R Thompson Chairman (ACGBI) Portsmouth
Dr. I Heath (RCGP) London
Dr. B Ellis (RCGP) Petersfield
Dr. E Swarbrick (BSG) Wolverhampton
Prof C Coles (Education) Wessex
Ms. L Faulds Wood (Patient Representative) London
Dr. W S Atkin (ICRF, Epidemiologist) London
2. Patients’ Representative
Ms B Miles (NCA) (Warwick)
3. Royal College of General Practitioners Dr. A Hibble (Stamford)
Prof R Jones (London)
Dr. W Reith (London)
Prof A Hutchinson (Sheffield)
Prof N Stott (Cardiff)
Prof P Hungin (Cleveland)
4. British Society of Gastroenterology
Dr. M Hellier (Swindon)
Dr. A Manning (Bradford
Dr. B Saunders (London)
Dr. R Long (Nottingham)
Dr. P D Fairclough (London)
Prof D Colin Jones (Portsmouth)
5. Association of Coloproctology of Great Britain and Ireland
Mr. W J Cunliffe (Gateshead)
Mr. I MacLellan (Manchester)
Mr. J Northover (London)
Mr. I Finlay (Glasgow)
Mr. C Marks (Guildford)
Mr. N Carr (Swansea)
6. Royal College of Nursing
Prof D Foxcroft (Warwick)
7. Royal College of Physicians
Prof J Rhodes (Liverpool)
8. British Association of Surgical Oncology
Prof J Monson (Hull)
Peer Reviewed articles on symptoms 2000-2020
1. Thompson JA, Pond CL, Ellis BG, Beach A, Thompson MR. Rectal Bleeding in General and Hospital Practice; ‘The tip of the iceberg’. Colorect Dis 2000;288-293
2. National Referral Guidelines for Bowel Cancer www.acpgbi.org.uk Colorectal Dis 2002; 4 (4): 287-2972.
3. Thompson MR, Heath I, Ellis BG, Swarbrick ET, Faulds Wood L, Atkin WS. Identifying and managing patients at low risk of bowel cancer in General Practice. BMJ 2003; 327: 263-265
4. Flashman K, O’Leary DP, Senapati A, Thompson MR. The Department of Health’s ‘two-week standard’ for bowel cancer: is it working? Gut 2004;53(3): 387-391
5. Ellis BG, Thompson MR. Factors identifying higher risk bleeding in general practice. Br J Gen Pract 2005; 55(521): 949-55
6. Thompson MR, Perera R, Senapati A, Dodds S. The diagnostic and predictive value of the common symptom combinations of bowel cancer. BJS 2007: 94: 1260-1265
7. Thompson MR, Flashman KG, Wooldrage K, Statistician, Rogers PA, Senapati A, O’LearyDP, Atkin WS. Flexible sigmoidoscopy and whole colonic imaging in the diagnosis of cancer in patients with colorectal symptoms. Br J Surg 2008; 95: 1140-114
8. Thompson MR, I. Heath, E. T. Swarbrick, L. Faulds Wood and B. G. Ellis Earlier diagnosis and treatment of symptomatic bowel cancer: can it be achieved and how much will it improve survival? Colorectal Disease 2011; 13, 6–17
9. Thompson MR, Asiimwe A, Flashman K, Tsavellas G Is earlier referral and investigation of bowel cancer patients presenting with rectal bleeding associated with better survival? Colorectal Disease 2011;13:1242-1248
10. Thompson MR , O’Leary D P, Flashman K, Asiimwe A, Elli BG, Senapati A Clinical assessment to determine the risk of bowel cancer using Symptoms, Age, Mass and Iron deficiency anaemia (SAMI) 2017 Br J Surg; 104: 1393-404.
11. Atkin W, Wooldrage K, Thompson MR et al Is whole colonic imaging by colonoscopy, computerised tomography colonography or barium enema necessary for all patients with colorectal cancer symptoms, and for which patients would flexible sigmoidoscopy suffice? A retrospective cohort study. Health Technology Assess 2017;21(66):1-80
12. Cross A, Wooldrage K, Robbins, Thompson MR et al Whole colonic imaging versus flexible sigmoidoscopy for suspected colorectal cancer based on presenting symptoms and signs: a multiple cohort study British Journal of Cancer 2019 120; 154-164
13. Thompson MR, O’Leary D’ Heath I, Faulds Wood l, et al Have large increases in fast track referrals improved bowel cancer outcomes in UK? BMJ 2020; 371 doi: https://doi.org/10.1136/bmj.m3273 (Published November 2020) Cite this as: BMJ 2020; 371:m3273
Preliminary study on the on the symptom checker done by UCL before going on line.
Evaluation of an online bowel symptom checker on people who currently have bowel problems Michaela Siamata 1 , Alice Simon 2 , Christian von Wagner 3 , Michael Thompson 4
1 University of Cyprus, 2 City University London, 3 University College London, 4 Portsmouth NHS Hospital Trust
Conclusion
This study was the first effort to evaluate an online bowel symptom checker. The results were confirmatory regarding the commonness of bower problems as the majority of the people who experienced such problems had low risk of bowel cancer and there was no need to see their GP. The majority of people followed the symptom checker’s advice to either self-treat or see their GP. This result is encouraging as prompt diagnosis and treatment of bowel cancer are important in survival rates but also the medical examinations can be harmful (physically and psychologically) for people with benign symptoms.
Moreover, the symptom checker found to significantly increase people’s knowledge regarding the bowel cancer key symptoms and their perceived self-efficacy for dealing with bowel problems while it was found to significantly decrease people’s perceived vulnerability to bowel cancer. These findings are reasonable as the symptom checker provides information regarding bowel cancer key symptoms and also tailored advice on how to cure the bowel problems which is probably the reason for the increase of knowledge of bowel cancer symptoms and perceived self-efficacy. The fact that the majority of people do not have something serious is probably related to the decrease in perceived vulnerability. As the anxiety levels were not too high (based on pre-questionnaire data), it is not surprising that the reassurance of the symptom checker did not have a significant impact on them.
Finally, although factors such as lack of knowledge regarding potential cancer symptoms, unawareness of being at risk, fear and low perceived self-efficacy to cope with the problem have been found to contribute to the delay of help-seeking, these factors did not find to influence significantly people’s adherence to the symptom checker’s advice. People’s actual behaviour after the completion of the symptom checker should be examined further and other factors which may influence adherence to the tailored advice must be evaluated.
In conclusion, the results show that this online bowel symptom checker is promising in helping people taking the right decision and either self-treat their bowel problems or see their GP without delay. However, further research should be conducted regarding the long-term impact of the symptom checker on help-seeking behaviour and the reasons for not adherence to the provided advice.