The challenges of coding cancer of unknown primary A survey of registration and reporting practices...

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

Content

Introduction 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?

2 Coding cancer of unknown primary - a registration and reporting survey in the UK, Ireland and Australia

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).


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.


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.


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.



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?


EnglandScotland, Wales, Northern Ireland &

IrelandAustralia

Yes 5 3 3 55%No 3 1 5 45%


Question 4: Does a CUP cause of death get matched against a prior site-specific cancer registration?


0

1

2

3

4

5

6

Yes No Dependslength &

type

Dependslength

Dependstype

{Commentonly}

Nu

mb

er

of

res

po

ns

es

All registries (n = 20)

0

1

2

3

4

5

6

Yes No Dependslength &

type

Dependslength

Dependstype

England (n = 8)


Question 11: If additional information is sought from notifier(s), who would be contacted for it?


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






Scotland, Wales, Northern Ireland & Ireland

0 2 4 6 8

Q11.6_Radiologist

Q11.3_Pathologist






England

0% 25% 50% 75% 100%

Q11.6_Radiologist

Q11.3_Pathologist






Always Sometimes Rarely Never No answer

England (100% = 8 registries)

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

Pathology

Clinical

DCO

Unknown


Question 18: Indicate the number of cases broken down by the basis of diagnosis/registration (source of information).


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


Question 18: Indicate the number of cases broken down by the code used to report CUP [all translated to ICD10].


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?


Thanks!

Thanks also go to the Australian registries for their participation.


The challenges of coding cancer of unknown primary A survey of registration and reporting practices...

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