1. Optimising symptomatic cancer diagnosis in primary care Dr Fiona Walter The Primary Care Unit Cambridge Institute AWAY DAY 25 th June 2014 of Public Health

2. How has our primary care cancer diagnosis research influenced policy and practice?  NIHR  DISCOVERY programme (PG) 2010-5  MelaTools programme (CS) 2013-8  Charities  Cancer Research UK/ NAEDI  Pancreatic Cancer Action  Team  Linda Birt, Angelos Kassianos, Silvia Mendonca, Katie Mills, Helen Morris, Chantal Smeekens, Juliet Usher-Smith ‘Exemplar of the work of the PCU’

3. BACKGROUND ICBP: Coleman et al, Lancet 2011 The National Awareness and Early Diagnosis Initiative (NAEDI)

4. METHODS - Model of Pathways to Treatment Walter et al, JHSR&P 2012, Scott et al, BJHP 2013

5. METHODS - Aarhus Statement Weller et al, BJC 2012

6. PUBLIC AWARENESS  Factors influencing time to presentation:  Appraisal: lack of knowledge  Help-seeking: avoidance, fatalism, reluctance to seek help (including embarrassment, wasting the doctor’s time)  Be Clear on Cancer campaigns- lung, colorectal cancer Early evidence of effects on:  Awareness  GP consultations  Use of diagnostic tests  Urgent referrals Preliminary results suggest:  Impact on stage at diagnosis  Trigger presentation

7. PUBLIC AWARENESS- skin cancer Walter et al. BMJ Open, in press  Be Clear on Cancer campaigns- skin cancer  Melanoma interview study  63 adults aged 29 - 93  Interviewed with 10 weeks of diagnosis  Key results  Common features: change in size, shape, colour  Unassuming features: ‘just a little spot’  Subtly different patterns of features: ‘vertical growth’  Normal explanations: life changes

8. PATIENT PATHWAYS- Symptom Study What symptoms and other patient factors are associated with later presentation or later stage at diagnosis of lung, colorectal, pancreas cancer?  Prospective cohort study: patient questionnaires and nested qualitative in-depth interviews  Setting: East and North East England, patients referred to urgent, routine & investigative clinics  Inclusion criteria: aged ≥40 with symptoms suspicious of colorectal, lung, pancreatic cancer  Recruitment: when referred, mailed SYMPTOM questionnaire  Further data collection: from primary care and hospital records relating to participants’ symptoms and diagnosis RECRUITMENT To end May 2014 COLORECTAL2506 LUNG996 PANCREAS334

9. Inhibiting Facilitating “And if I should be out and I get this sort of urge to go to the toilet, I have to go otherwise I’ve pooed myself... very embarrassing” ( female, 77 years, NC) “that was probably the thing that put me off going more than anything in the first instance was the embarrassment of that sort of thing... I don’t suppose anybody likes, whether it’s a doctor or not, playing around what you consider as your private parts” (Male, 66 years, CRC)  Looking for symptom relief  Perceived seriousness and/or anxiety about cancer  Loss of privacy e.g. wind, faecal incontinence (or fear of)  Lack of embarrassment Prompt help-seeking  Socio-cultural norms  Symptom monitoring  Embarrassment of investigations PATIENT VIEWS- ‘ private nature of symptoms’ me personally, the way I was brought up, one, you don’t talk about downstairs, and two, you don’t look at downstairs. So, when people ask me questions like “Is it in the stool?” or anything like that, I tend not to look, I do now, but I didn’t then” (Female, 54 years, NC)

10. PATIENT VIEWS- diagnostic tests & referrals Banks et al. Lancet Onc 2014 PIVOT study- Bristol, Exeter, East of England Clinical vignettes presented on a tablet in GP waiting rooms

11. RISK ASSESSMENT TOOLS for GPs  CAPER studies  Main output: risk assessment tools (RATs)  Piloted in 152 practices in England over a 6-month period, and resulted in:  Increase in referrals for suspected cancer  Increase in number of colonoscopies  Increase in number of colorectal cancers diagnosed Hamilton et al BJGP 2013

12. MELANOMA CLINCIAL DECISION SUPPORT Walter et al, BMJ 2012

13. DIAGNOSTIC TECHNOLOGIES Kadri et al, BMJ 2010

14. PRIMARY CARE CANCER DIAGNOSIS RESEARCH CURRENT  Methodological frameworks  Public awareness  Patient pathways- symptoms  Patient views- diagnostics  Risk assessment tools  E-clinical decision support  Diagnostic technologies  devices, informatics, biomarkers NEXT…  Other behavioural approaches e.g. patient self-monitoring  New investigative & referral routes  Socio-economic inequalities  Diagnostic technologies  devices, informatics, biomarkers  Pre-symptomatic diagnosis THANK YOU fmw22@medschl.cam.ac.uk