The challenges of coding cancer of unknown primary
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The challenges of coding cancer of unknown primaryA survey of registration and reporting practices in the UK, Ireland and Australia
Claudia Oehler1, Claire Vajdic2, Nicola Cooper1, John Symons3
1 National Cancer Intelligence Network, Public Health England2 University of New South Wales, Australia3 Cancer of Unknown Primary Foundation, UK CRUK-NCIN Partnership Programme
National Cancer Intelligence Network
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ContentIntroduction to results of the survey on registration and reporting of Cancer of Unknown Primary (CUP):
1. Overview: what is CUP? why is it problematic?
2. The survey: what was its purpose?
3. The results: what did it tell us?
4. Conclusion: what next?
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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).
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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: mainly four ICD10 codes C77, 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.
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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.
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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.
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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?
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EnglandScotland, Wales, Northern Ireland &
IrelandAustralia
Yes 5 3 3 55%No 3 1 5 45%
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What did the survey tell us?Question 4: Does a CUP cause of death get matched against a prior site-specific cancer registration?
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0
1
2
3
4
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Yes No Dependslength &
type
Dependslength
Dependstype
{Commentonly}
Num
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f res
pons
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All registries (n = 20)
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2
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Yes No Dependslength &
type
Dependslength
Dependstype
England (n = 8)
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What did the survey tell us?Question 11: If additional information is sought from notifier(s), who would be contacted for it?
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0 2 4 6 8
Q11.6_Radiologist
Q11.3_Pathologist
Q11.4_Primary care clinician
Q11.2_Referring doctor
Q11.5_Treating doctor
Q11.7_Hospital coding dept
Q11.1_Notifying institution
Australia
0 1 2 3 4
Q11.6_Radiologist
Q11.3_Pathologist
Q11.4_Primary care clinician
Q11.2_Referring doctor
Q11.5_Treating doctor
Q11.7_Hospital coding dept
Q11.1_Notifying institution
Scotland, Wales, Northern Ireland & Ireland
0 2 4 6 8
Q11.6_Radiologist
Q11.3_Pathologist
Q11.4_Primary care clinician
Q11.2_Referring doctor
Q11.5_Treating doctor
Q11.7_Hospital coding dept
Q11.1_Notifying institution
England
0% 25% 50% 75% 100%
Q11.6_Radiologist
Q11.3_Pathologist
Q11.4_Primary care clinician
Q11.2_Referring doctor
Q11.5_Treating doctor
Q11.7_Hospital coding dept
Q11.1_Notifying institution
Always Sometimes Rarely Never No answer
England (100% = 8 registries)
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0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
E1 E2 E3 E4 E5 E6 E7 E8 X1 X2 X3 X4 A1 A2 A3 A4 A5 A6 A7 A8
England Scotland, Wales,Northern Ireland &
Ireland
Australia
PathologyClinicalDCOUnknown
What did the survey tell us?Question 18: Indicate the number of cases broken down by the basis of diagnosis/registration (source of information).
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0%
20%
40%
60%
80%
100%
E1 E2 E3 E4 E5 E6 E7 E8 X1 X2 X3 X4 A1 A2 A3 A4 A5 A6 A7 A8
England Scotland, Wales,Northern Ireland &
Ireland
Australia
C26
C39
C76
C77
C78
C79
C80
/6 or /9
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].
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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?
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Thanks!
Thanks also go to the Australian registries for their participation.
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