1. + Qcancer: symptom based approach to cancer risk assessment Julia Hippisley-Cox, GP, Professor Epidemiology & Director ClinRisk Ltd 3 rd cancer Care Congress 26 Sept 2012

2. + Acknowledgements Co-authors QResearch database EMIS & contributing practices & User Group University of Nottingham ClinRisk (software) Oxford University (independent validation) This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

3. + QResearch Database www.qresearch.org www.qresearch.org Over 700 general practices across the UK, 14 million patients Joint venture between EMIS and University of Nottingham Patient level pseudonymised database for research Available for peer reviewed academic research where outputs made publically available Data linkage – deaths, deprivation, cancer, HES This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

4. + QScores – new family of Risk Prediction tools Individual assessment  Who is most at risk of preventable disease?  Who is likely to benefit from interventions?  What is the balance of risks and benefits for my patient?  Enable informed consent and shared decisions Population level  Risk stratification  Identification of rank ordered list of patients for recall or reassurance GP systems integration  Allow updates tool over time, audit of impact on services and outcomes This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

5. + Early diagnosis of cancer: The problem UK has relatively poor track record when compared with other European countries Partly due to late diagnosis with estimated 7,500+ lives lost annually Later diagnosis due to mixture of late presentation by patient (alack awareness) Late recognition by GP Delays in secondary care This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

6. + Symptoms based approach Patients present with symptoms GPs need to decide which patients to investigate and refer Decision support tool must mirror setting where decisions made Symptoms based approach needed (rather than cancer based) Must account for multiple symptoms Must have face clinical validity eg adjust for age, sex, smoking, FH updated to meet changing requirements, populations, recorded data This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

7. + QCancer scores – what they need to do Accurately predict level of risk for individual based on risk factors and multiple symptoms Discriminate between patients with and without cancer Help guide decision on who to investigate or refer and degree of urgency. Educational tool for sharing information with patient. Sometimes will be reassurance. This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

8. + Methods – development algorithm Huge representative sample from QResearch aged 30-84 Identify new alarm symptoms (eg rectal bleeding, haemoptysis) and other risk factors (eg age, COPD, smoking, family history) Identify cancer outcome - all new diagnoses either on GP record or linked ONS deaths record in next 2 years Established methods to develop risk prediction algorithm Identify independent factors adjusted for other factors Measure of absolute risk of cancer. Eg 5% risk of colorectal cancer This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

9. + ‘Red’ flag or alarm symptoms (identified from studies including NICE guidelines 2005) Haemoptysis Haematemesis Dysphagia Rectal bleeding Vaginal bleeding Haematuria dysphagia Constipation, cough Loss of appetite Weight loss Indigestion +/- heart burn Abdominal pain Abdominal swelling Family history Anaemia Breast lump, pain, skin tethering This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

10. + Qcancer now predicts risk all major cancers including PancreasLung KidneyOvary Colorectal Gastro Testis Breast Prostate Blood Cervix Uterus This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

11. + Results – the algorithms/predictors OutcomeRisk factorsSymptoms LungAge, sex, smoking, deprivation, COPD, prior cancers Haemoptysis, appetite loss, weight loss, cough, anaemia Gastro- oeso Age, sex, smoking status Haematemsis, appetite loss, weight loss, abdo pain, dysphagia ColorectalAge, sex, alcohol, family history Rectal bleeding, appetite loss, weight loss, abdo pain, change bowel habit, anaemia PancreasAge, sex, type 2, chronic pancreatitis dysphagia, appetite loss, weight loss, abdo pain, abdo distension, constipation OvarianAge, family historyRectal bleeding, appetite loss, weight loss, abdo pain, abdo distension, PMB, anaemia RenalAge, sex, smoking status, prior cancer Haematuria, appetite loss, weight loss, abdo pain, anaemia This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

12. + Methods - validation is crucial Essential to demonstrate the tools work and identify right people in an efficient manner Tested performance separate sample of QResearch practices external dataset (Vision practices) at Oxford University Measures of discrimination - identifying those who do and don’t have cancer Measures of calibration - closeness of predicted risk to observed risk Measure performance – Positive predictive value, sensitivity This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

13. + Using QCancer in practice – v similar to QRISK2 Standalone tools a. Web calculator www.qcancer.org/2013/female/php www.qcancer.org/2013/male/php b. Windows desk top calculator c. Iphone – simple calculator Integrated into clinical system a. Within consultation: GP with patients with symptoms b. Batch: Run in batch mode to risk stratify entire practice or PCT population This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

14. + QCancer – women http://qcancer.org/2013/female/index.php PROFILE 64yr old woman, Moderate smoker Loss appetite Abdo pain Abdo swelling 72% risk of no cancer 28% risk any cancer - ovarian = 20% - colorectal = 1.5% - pancreas =.16% - Other 3.4% This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

15. + QCancer – men http://qcancer.org/2013/male/index.php PROFILE 64yr old man, Heavy smoker FH GI cancer Loss appetite Recent VTE Weight loss Indigestion RESULTS 71% risk of no cancer 29% risk any cancer Lung = 9% Pancreas =6% Prostate =2% Other =5% This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

16. + GP systems integration Batch processing Similar to QRISK which is in 95% of GP practices– automatic daily calculation of risk for all patients in practice based on existing data. Identify patients with symptoms/adverse risk profile without follow up/diagnosis Enables systematic recall or further investigation Systematic approach - prioritise by level of risk. This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

17. + Next steps - pilot work in clinical practice supported by Macmillan& DH

18. + Thank you for listening Questions & Discussion This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License

19. + Comparison other cancer risk tools Large UK sample with data until 2012 Symptoms based approach Takes account of risk factors including age, sex, smoking, FH Independent external validation by Oxford University Can be updated and integrated into computer systems into workflow 20-40 Exeter practices; paper records from 10 years ago Focused on single symptoms and pairs where enough data No adjustment for age although cancer risk changes with age Not validated Distributed as a mouse mat for each cancer QCancerThe “RAT” This work by Julia Hippisley-Cox is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported LicenseJulia Hippisley-CoxCreative Commons Attribution-ShareAlike 3.0 Unported License