Improvements in national staging ascertainment in England (2011-2016)

1. Improvements in national staging ascertainment in England (2011-2016) Dr. Michael Eden MBBS, FRCPath, MSc, CHAT, CHCCT Consultant Pathologist, Cambridge University Hospitals NHS Trust Clinical Lead and Associate Caldicott Guardian, NDR, Public Health England

2. Conclusions and Recommendations A particular problem is the paucity of data in most regions about the stage that a patient’s cancer has reached at the time of diagnosis. This information, known as ‘staging data’, is key to making better use of resources and improving outcomes, yet only the Eastern region has anything like acceptable coverage. The Department needs to convey to cancer registries and, in turn, to clinical teams the value and importance of recording accurate staging data at the point of patient diagnosis. The Department should ensure that staging data is complete and timely in at least 70% of cases in each region by the end of 2012.

3. Note: The Eastern Cancer Registry stages over 95% of stageable cancers at 42 tumour sites - the graph shows data for all tumours

4. Staging data flows to Cancer Registries Registry Clinical Imaging Pathology pT pN pMX National Audits MDT

5. What did ECRIC do? Registry Clinical Imaging Pathology MDT

6. Pathology bias in older staging data caused problems…

8. Stage distribution

12. The problems • Data not entered in MDT systems • Data not extracted from MDT systems • Lack of access to the right people to get the data The existing registry systems couldn’t capture staging data MDT co-ordinator Clinicians IT expert

13. But what about… • Dates? • Source of information? • TNM version? • Component parts – size of tumour, extent etc

14. Provide guidance/rules • National Cancer Staging Panel for Registration • Brian Rous • Mick Peake • Sean McPhail • Gill Lawrence • Gina Brown • Trish Stokes • Steven Oliver

15. SSCRGs PANEL Physicians Surgeons Radiologists Other experts

16. The plan • Standardise rules and guidance • Update Cancer Registry Data systems to collect stage • Work with MDTs directly to improve collection of staging data • Regular feedback to MDTs on the data they have submitted • Train cancer registration officers in collection of stage • Produce tools to assist cancer registration officers

17. The plan • Standardise rules and guidance • Update Cancer Registry Data systems to collect stage • Work with MDTs directly to improve collection of staging data • Train cancer registration officers in collection of stage • Produce tools to assist cancer registration officers

18. Stage (at diagnosis) Surgery (pT4 pN1) CT scan (cM1) Diagnosis Chest x-ray (cM0) Time Decision to Treat 4 months Biopsy of LN (pN1) PET scan (cM0) Clinical exam (cT3)

19. Other generic rules • Death certificates are not valid sources of staging information • Microscopic verification • Staging is morphology as well as site dependent • Strictly speaking microscopic verification required for staging • We will stage non-microscopically verified tumour if clinically thought to be appropriate (e.g. Clinically lung carcinoma), but will record whether or not microscopically verified. • Unknown primary tumours are not staged

20. Specific guidance • Which staging systems should the registries expect? • What site/morphologies can be staged? • How many tumours should we expect to be staged? • How are specific tumours staged? (CT? MRI?) • Extracting information from non-MDT sources: • Radiology • Pathology • What to do if data is missing? Making assumptions • Converting between staging systems (e.g FIGO/TNM) • Deriving an ‘integrated’ registry stage from the data

21. The plan • Standardise rules and guidance • Update Cancer Registry Data systems to collect stage • Work with MDTs directly to improve collection of staging data • Regular feedback to MDTs on the data they have submitted • Train cancer registration officers in collection of stage • Produce tools to assist cancer registration officers

22. Cancer Registry Modernisation 2011 2013 2017

23. Staging in Encore

24. The plan • Standardise rules and guidance • Update Cancer Registry Data systems to collect stage • Work with MDTs directly to improve collection of staging data • Regular feedback to MDTs on the data they have submitted • Train cancer registration officers in collection of stage • Produce tools to assist cancer registration officers

27. The plan • Standardise rules and guidance • Update Cancer Registry Data systems to collect stage • Work with MDTs directly to improve collection of staging data • Regular feedback to MDTs on the data they have submitted • Train cancer registration officers in collection of stage • Produce tools to assist cancer registration officers

28. https://cancerstats.ndrs.nhs.uk Data Liaison | Public Health England | 2018

29. Level 3 example report: National Lung Cancer Audit (NLCA) Data Liaison | Public Health England | 2018

30. The plan • Standardise rules and guidance • Update Cancer Registry Data systems to collect stage • Work with MDTs directly to improve collection of staging data • Regular feedback to MDTs on the data they have submitted • Train cancer registration officers in collection of stage • Produce tools to assist cancer registration officers

31. Tumour staging supervisors • Two individuals at each registry office • Regular staging training as a group • Discuss difficult scenarios • Tackle one site at a time • Initially regularly monthly meeting (for about a year) - then moving to teleconferences.

35. The plan • Standardise rules and guidance • Update Cancer Registry Data systems to collect stage • Work with MDTs directly to improve collection of staging data • Regular feedback to MDTs on the data they have submitted • Train cancer registration officers in collection of stage • Produce tools to assist cancer registration officers

43. Where are we now?

44. Tumour staging completeness

45. Survival by stage

46. Prescribing for stage 4 cancers all malignancies excluding NMSC

47. With thanks to…. • Brian Rous • Natalie Pearce • Karen Graham • Jem Rashbass • Lucy Ellis-Brookes