Core – Diagnosis

Diagnosis details in the linkage section are required for every record in order to ensure that the correct record can be identified, and information can be correctly linked. The full diagnosis details section enables the disease to be correctly registered. All registerable conditions should be recorded – see Appendix B.

Recording an applicable diagnosis (including a ‘Date of Diagnosis’), triggers inclusion of the record in the submission. This information will normally be confirmed by the Multidisciplinary Team at their MDT Meeting.

Both ICD10 codes and morphology (SNOMED and/or ICD-O-3) should be completed for all cases, however morphology ICD-O-3 must be provided for all haematological, sarcoma and CTYA malignancies.

ICD-O-3 Topography Codes are only required to be submitted for CTYA cancers. In all other cases the ICD-O-3 Topography codes do not need to be completed by providers and will be recorded by the NCRAS.

The ICD-O-3 codes can be accessed on the International Agency for Research on Cancer (IARC) website.

There will only be one diagnosis section completed for each record. Diagnosis linkage items are required each time the record is submitted.

Note:

• the ICD10 codes for secondary cancer should only be used when the primary diagnosis is not known

This section will be agreed by the Multidisciplinary Team (MDT) responsible for the patient and will probably be completed at the time the patient is discussed at the MDT meeting. The details may be different from those which appear in the Pathology data items.

May be up to one occurrence as per primary cancer pathway (0..1)

Start of section - Current methodology - section 0..1

End of section - Current methodology

Start of repeating item - 'Metastatic type' and 'Metastatic Site' - section 0..*

End of repeating item - 'Metastatic type' and 'Metastatic Site'

Organisation Site Identifier (of Diagnosis)

The ‘Organisation Identifier’ of the organisation site where the patient diagnosis took place. The Trust who was responsible for the diagnosis of the patient should be entered here, using their 5 digit hospital code. It is important to take advice from the clinical teams if unsure before completing this field. Other scenarios around diagnoses could be (but not limited to):

Scenario 1

If a patient was diagnosed at Trust A, but referred to Trust B for treatment, then Trust A is the diagnosing Trust.

Scenario 2

If the definitive test that determines cancer is confirmed at Trust A, but the pathology was reported at Trust B, we would expect Trust A to be reported as the diagnosing Trust. 

Pathology reporting may be part of a pathology partnership, Trust A may no longer have a pathology department, Trust B therefore may report all pathology reports for several Trusts, this does not mean they are the diagnosing Trust

Scenario 3

If a request for a second opinion at Trust B is made to support the decision at Trust A, Trust A would be expected to be reported as the diagnosing Trust.

Scenario 4

If the management of the patient was done at Trust A, but specific tests were required to support the diagnosis at Trust B (and Trust B has no further part in the diagnostic/treatment process), we would expect Trust A to be reported as the diagnosing Trust.

For example, a lung patient is sent to a specialist centre for specialist diagnostic testing, which helps with the diagnosis but is part of Trust A’s diagnostic process, then Trust A is still the diagnosing Trust.

Scenario 5

In most cases a histological diagnosis would trump a clinical diagnosis (providing this is prior to treatment commencing), however:

• if a patient was clinically diagnosed with cancer at Trust A, and treatment starts without a histological diagnosis, then the clinical diagnosis should be used as the date of diagnosis and Trust A as the diagnosing Trust
• if a surgical treatment is then performed at a later date by any Trust, which resulted in a histologically confirmed diagnosis, we would expect the clinical diagnosis provided by Trust A to be reported as the date of diagnosis and Trust A as the diagnosing Trust
• these can be difficult decisions and clinical advice from the consultants should be sought if there is confusion
• these decisions will help the NCRAS accurately map all diagnoses and future analyses

Scenario 6

If the patient was referred to Trust A as a suspected cancer and then referred to another Trust (without a confirmed diagnosis of cancer) for diagnostics, treatment, and managed by Trust B, we would expect Trust B to be reported as the diagnosing Trust.

Basis of Diagnosis (Cancer)

This is the method used to confirm the cancer.

Notes:

• a liquid biopsy is a sample of blood or another body fluid (liquor, etc.) for the detection of cancer cells or DNA-fragments of these tumour cells
• 0, 1, 2 and 5 have new descriptions from v10
• 6 and 7 have been retired and 7.1, 7.2, 7.3 and 8 are new attributes from v10
• the format has changed to ‘max an3’ to accommodate the above changes

The aim of the basis of diagnosis is to provide a level of certainty of the diagnosis of cancer. This is particularly relevant in the absence of pathological confirmation of the cancer. The proportion of clinical diagnoses (basis of diagnosis 1-4) is an indicator for the quality of the data. While a high proportion of clinical diagnoses in a cancer registry may well reflect the situation regarding clinical and pathological investigations in the registry area, especially in developing countries, it may also indicate an overestimation of the cancer incidence. On the other hand, in registries with a very low proportion of clinical diagnoses there may be an underestimation of the cancer incidence.

More information about the new Basis of Diagnosis coding, can be found via the European Network of Cancer Registries (ENCR).

Morphology (ICD-O-3)

The morphology code for the diagnosed cancer as defined by ICD-O-3. This data item must be completed for all Haematological, Sarcoma and CTYA diagnoses.

Important notes:

• the next 2 data items are now a multiple selection group and If this choice is selected, this becomes a mandatory data item, required to improve data quality
• there may be one occurrence per ‘CORE – Diagnosis’ section (0..1)

Morphology (SNOMED) Diagnosis

This is the patient diagnosis using the SNOMED International / SNOMED CT code for the cell type of the malignant disease recorded as part of a Cancer Care Spell. This can be recorded as well as or instead of ‘MORPHOLOGY (ICD-O-3)’.

SNOMED Version (Diagnosis)

The version of SNOMED used to encode ‘Morphology (SNOMED) Pathology’ and ‘Topography (SNOMED) Pathology’.

Topography (ICD-O-3)

The topographical site code for the tumour as defined by ICD-O-3. For all cases except CTYA, the NCRAS will derive this. For CTYA cases this is mandatory and should be included in the submission by NHS Providers. This Must be submitted using a decimal point for example C50.9.

Note:

• this has a new format ‘min an4 max an7’ to improve data quality and ascertainment

Ki67

This is a new pilot data item in v10 and only required by Trusts who host a neuroendocrine MDT and has a range of 0-100. This will be provided at the MDT by a clinician, please consult your MDT lead for clarification of this data item, if not discussed at the meeting.

Grade of Differentiation (at Diagnosis):

This is the definitive grade of the tumour at the time of patient diagnosis.

Note:

• not required for prostate cancer, testicular cancer or haematological diagnoses

Notes:

• the default labels for these fields (“well differentiated”, “moderately differentiated” and “poorly differentiated”) are not applicable to NET
• these are nationally assigned ‘general’ descriptions used within COSD, the correct grade will be applied by the NCRAS upon processing the data

The following mapping table can be used to map other (site-specific) invasive grades, into the main ‘Grade of Differentiation (At Diagnosis)’ field

Performance Status (Adult)

A World Health Organisation classification indicating a person's status relating to activity / disability. Although most patients have their performance status assessed before each treatment, within COSD we need a single point to measure all patients and this item can only be recorded once. Performance status is therefore requested to be recorded as close to the point of diagnosis as possible.

Notes:

• this data item is not applicable for Paediatric patients or Skin diagnoses, except for melanoma stage 4
• if a patient is on high dose steroid therapy (for example, dexamethasone), which is clinically considered to have artificially and temporarily improved the patient’s performance status, the performance status assessed prior to commencing on steroids should be recorded

Diagnosis Code (SNOMED CT)

‘Diagnosis Code (SNOMED CT)’ is the SNOMED CT concept ID which is used to identify the clinical diagnosis given to the patient.

Note:

• please refer to the ‘how to find a SNOMED CT diagnosis’ for support

Metastatic Type

Indicate the type of metastatic disease diagnosed by the clinical team.

Metastatic Site

The site of the metastatic disease, if any, at diagnosis. Multiple occurrences of this item are permitted.

Notes:

• both Metastatic Type and Site are within a multiple selection group and both fields are mandatory within the group
• if there are more than one metastatic region, all can now be recorded correctly. This is not applicable for most Haematological diagnoses

It is possible that some legacy data may not have all the required mandatory fields. The recommendation is for Trusts to update their data to meet the new requirements and improve/enrich their data submissions, or not upload the legacy data items in the new record (if that data is not available).

This is a child group of ‘CORE – Diagnosis’. 

May be up to one occurrence per Core - Diagnosis (0..1)

Start of repeating item - 'Secondary Diagnosis (ICD10)'

End of repeating item - 'Secondary Diagnosis (ICD10)'

Start of Repeating Item - Functional Syndrome Classification Type

End of Repeating Item - Functional Syndrome Classification Type

Start of Repeating Section - Functional Syndrome Classification Type Unknown

End of Repeating Section - Functional Syndrome Classification Type Unknown

Primary Diagnosis Subsidiary Comment

Additional comments on diagnosis where coding is difficult or imprecise. (Examples of this would be: "papillary glioneuronal tumour" or "angiocentric glioma" to specify recently described diagnoses which do not have ICD10 or ICD-O-3 coding. "Anaplastic ependymoma" or "ependymoblastoma" to distinguish between these 2 diagnoses which may have different treatment decisions or outcomes, but which cannot be distinguished in ICD10 or ICD-O-3 coding.)".

Secondary Diagnosis (ICD)

This is a multiple repeating data item. Record the types (ICD10 codes) of other significant conditions (for example Down Syndrome, NF1, Fanconi anaemia) which may predispose to cancer or influence treatment. This information should be available for the MDT discussion but will only apply to a small number of cases. See Appendix D for more information.

Other Significant Diagnosis Subsidiary Comment

Additional comments on other significant conditions where coding is difficult or imprecise. (For example, “NF1” or “NF2” to distinguish between these 2 distinct conditions which may have different treatment decisions or outcomes but cannot be coded separately.) This information should be available for the MDT discussion but will only apply to a small number of cases.

Familial Cancer Syndrome

Indicate whether there is a possible or confirmed familial cancer syndrome. This information should be available for the MDT discussion but will only apply to a small number of cases.

Familial Cancer Syndrome Subsidiary Comment

Where ‘Familial Cancer Syndrome’ is coded as ‘Yes’ or ‘Possible’, this field can be used to provide further details. For example, ‘Li-Fraumeni’, ‘Rhabdoid tumour predisposition syndrome’ or ‘Biallelic PMS2 mutation’ to identify distinct syndromes which may have different treatment decisions or outcomes but cannot be coded separately.

Functional Syndrome Classification Indicator

This is a new data item for v10. Indicate whether there is a possible or confirmed Functional syndrome classification

Functional Syndrome Classification Type

This is a new data item for v10. Specify the type of functional syndrome classification the patient is diagnosed with.

More than one is possible if applicable and this item is for Neuroendocrine tumours (NET) only.

Note:

• the following forms a repeating section

Functional Syndrome Classification Type

This is a new data item for v10. Specify 'Other functional syndrome' if none of the above are applicable.

Other Functional Syndrome Classification Type

This is a new data item for v10. If 98 selected above, specify the other functional syndrome classification type.

This is a child group of ‘Core – Diagnosis’. This allows for where a patient’s disease has progressed whilst on their original primary pathway to be recorded. All these data items are now mandatory and must be submitted per submission, more than one submission is permitted per diagnosis.

May be multiple occurrences per CORE - Diagnosis (0..*)

Start of repeating item - 'Metastatic type' and 'Metastatic Site'

May be multiple occurrences per Core - Diagnosis - Progression (0..*)

End of repeating item - 'Metastatic type' and 'Metastatic Site'

Metastatic Type

Indicate the type of metastatic disease diagnosed by the clinical team.

Metastatic Site

The site of the metastatic disease, if any, at diagnosis.

Additional notes:

• both Metastatic Type and Site are now a multiple selection group, both fields are mandatory within the group
• if there is more than one metastatic region, all can now be recorded correctly

It is possible that some legacy data may not have all the required mandatory fields. The recommendation is for Trusts to update their data to meet the new requirements and improve/enrich their data submissions, or not upload the legacy data items in the new record (if that data is not available).

Progression Date (Primary Pathway)

The date the progression was agreed by the clinical team. This allows for the date of progression (that happens during the initial cancer primary diagnostic or treatment phase) to be recorded.

This is a child group of ‘CORE – Diagnosis’. This allows for where a patient’s disease has transformed whilst on their original primary pathway to be recorded and more than one submission is permitted per diagnosis.

May be multiple occurrences per Core - Diagnosis (0..*)

Diagnosis transformation morphology choice - Choice 1..2

Diagnosis transformation morphology - Choice 1

End of diagnosis transformation morphology - Choice 1

Diagnosis transformation morphology - Choice 2

Start of section - Current morphology

End of repeating section - Metastatic type and site

End of diagnosis transformation morphology - Choice 2

End of diagnosis transformation morphology choice

Transformation Date (Primary Pathway)

This is a mandatory data item and is the date the disease transforms. This will normally be agreed at the MDT by the clinical team.

Note:

• the next 3 data items form a 2-choice menu and at least one of the following must be provided per Transformation (1..2).

Choice 1 - Morphology (ICD-O-3) Transformation

If this choice is selected, this becomes a mandatory data item, required to improve data quality. The morphology code for the transformation of the cancer as defined by ICD-O-3. This can be recorded as well as or instead of ‘Morphology (SNOMED) Transformation’.

Choice 2 - Morphology (SNOMED) Transformation

This is the transformation diagnosis using the SNOMED International / SNOMED CT code for the cell type of the tumour recorded as part of a cancer care spell. This can be recorded as well as or instead of ‘Morphology (ICD-O-3) Transformation’.

SNOMED Version Current (Transformation)

The version of SNOMED used to encode ‘Morphology (SNOMED) Pathology’ and ‘Topography (SNOMED) Pathology’.

Notes:

• both ‘Morphology (SNOMED) Transformation’ and ‘SNOMED Version Current (Transformation)’ are now a multiple selection group and both data items are mandatory within the group
• there may be one occurrence per transformation

Notes:

• ‘Banked Tissue at Diagnosis’ has moved to CTYA – Diagnosis – Banked Tissue

• ‘Type of Tissue Banked at Diagnosis’ has been retired from v10