The challenges of coding cancer of unknown primary

1. National Cancer Intelligence Network The challenges of coding cancer of unknown primary Claudia Oehler1, Claire Vajdic2, Nicola Cooper1, John Symons3 1 National Cancer Intelligence Network, Public Health England 2 University of New South Wales, Australia 3 Cancer of Unknown Primary Foundation, UK A survey of registration and reporting practices in the UK, Ireland and Australia CRUK-NCINPartnership Programme

2. Content • Introduction to results of the survey on registration and reporting of Cancer of Unknown Primary (CUP): • Overview: what is CUP? why is it problematic? • The survey: what was its purpose? • The results: what did it tell us? • Conclusion: what next? Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia

3. What is cancer of unknown primary? • Cancer of unknown primary (CUP) is a diagnostic term for cancer which has spread from its initial location and where the original cancer cannot be determined with confidence. • Context • 9,762 cases and 10,812 deaths (UK, 2011); 16% 1-year relative survival; 57% emergencies (England, 2006-2010). • ~8th most common incident cancer (ca.15% cancers present as metastases, 1/3 no obvious origin); ~5th most common cancer cause of death. • 2010 first clinical guideline by National Institute of Clinical Excellence (NICE) recommending diagnostic pathway and multi-disciplinary teams. • 2013 first Peer Review Measures (internal validation by 133 Trusts). Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia

4. Why is CUP problematic? • Something 'unknown' is difficult to define and treat. • Clinically heterogeneous and complex presentations; diagnosis often difficult to determine; morphology and extent of cancer crucial for outcome. • Clinical uncertainty makes registration/coding of CUP difficult. • Codes used for reporting CUP vary substantially: • England:mainlyfourICD10codesC77,C78,C79(lymphatic,respiratory/abdominal and 'other' metastases) and C80 (primary cancer site unknown) - regional variations. • Others: solely C80, or additional ICD10 codes for ill-defined primary cancer sites, such as C26, C39 or C76 (ill-defined digestive, respiratory/intrathoracic, or generic sites, e.g. 'head and neck'). • Obscures accurate assessment of CUP burden; nationally & internationally. • Clear definition and consistent recording of CUP crucial for accurate statistics and clinically meaningful analyses. Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia

5. Purpose of the survey? • The aim was to compare CUP registration and reporting practices in the UK, Ireland and Australia, with a view to supporting improved national/international standardisation. • Methodology: • 20 registration services participated: 8 in Australia, the 8 regional NCRS in England, 1 each in Wales, Scotland, Northern Ireland and Ireland. • 2-part questionnaire: • Section 1 - Registration: coding guidance and system; coding scenarios; death certificate only; clarification process. • Section 2 - Reporting: codes used for reporting; incidence by source of diagnosis and morphology. Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia

6. What did the survey tell us? • Caveat: these are draft results; registration services will be given the opportunity to comment before publication. • To preserve the anonymity of individual responses, these are grouped: • Registration offices in England and Australia are grouped as that; when individual answers are shown, these are numbered E1-E8 and A1-A8; these numbers were randomly assigned. • Countries with a single national registry - Scotland, Wales, Northern Ireland and Ireland - are grouped here to obscure the identity of any individual registry until permission is obtained to attribute results by nation. When individual responses are shown, these countries are numbered X1-X4; these numbers were randomly assigned and do not correspond to the order in which they are listed. • Limitations: registration systems vary across countries; some of the differences may be due to a different casemix; a few questions were left blank / answers were unclear; April 2013, English registries merged to form National Cancer Registration Service. Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia

7. What did the survey tell us? • Survey confirmed variation in registration and reporting practices on almost every aspect covered. • For example, coding guidance for CUP: • Q1_Does your registry have guidelines that specifically cover the registration of CUP? Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia

8. What did the survey tell us? • Question 4: Does a CUP cause of death get matched against a prior site-specific cancer registration? Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia

9. What did the survey tell us? • Question 11: If additional information is sought from notifier(s), who would be contacted for it? Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia

10. What did the survey tell us? • Question 18: Indicate the number of cases broken down by the basis of diagnosis/registration (source of information). Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia

11. What did the survey tell us? • Question 18: Indicate the number of cases broken down by the code used to report CUP [all translated to ICD10]. Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia

12. What next? • Beyond the survey - two key areas: registration processes and codes/coding systems. • Registration processes • Guidance for CUP: clarification of notification; source of diagnosis; follow-up • Specific rules around death certificate notifications and matching to prior diagnoses (incl. clinical) • England: impact of National Cancer Registration Service merger; but what about the wider picture (UK, Ireland, Australia; Europe and beyond)? • Coding systems and codes • ICDO3 codes ≠ ICD10 C-codes; better depth of data with ICDO3 (particularly metastases)? Australian method? • Impact of CUP registration definition on mortality statistics? Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia

13. Thanks! • Thanks also go to the Australian registries for their participation. Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia