Information Specification

The data items required for National Cancer Data Standards for Wales – Site Specific – Breast and their equivalent labels in COSD V9.0, where there is an equivalent, are listed below.

 

Where the specification cites NHS Wales Data Dictionary, please refer to the Dictionary for the relevant guidance i.e. definition, format, or code list.

 

For consistency, all dates listed in the Specification are standardised as ccyymmdd.

 

Where D is denoted in Status, this indicates that the information should be derived from another data item. This typically occurs with data items that are simply text representations of their code counterparts. Other Status codes are M (Mandatory), R (Required) – the data item should be recorded where applicable and O (Optional).

 

 

Core data items should be collected for all cancers.  To reduce replication of information, Core data items have not been listed in this site-specific Standard and users should refer to National Cancer Data Standards for Wales – 1. National Cancer Data Set - Full list DSCNs.xlsx (live.com) for a list of Core requirements. However, in some cases, the site-specific application of Core data items may differ e.g. a particular tumour site may require additional or fewer codes to those already published in Core, or perhaps have additional business rules as to how the Core data item should be coded. Where this occurs, the Core data item will be replicated in the site-specific Standard with the respective additional site-specific detail. These are flagged in the following table with an * next to the data item name.

 

 

For data items used in the National Cancer Data Standards for Wales that already exist within the NHS Wales Data Dictionary. These data items have been flagged with an † next to the data item name, as whilst this introduces a change to an existing information standard, the immediate use of this mandate will be used as a framework for the development of the CIS, therefore service/data providers should continue with ‘business as usual’ in terms of the data being collected and reported.

 

 

 

National Cancer Data Standards for Wales - Breast

 

Data Item

Definition

Format

Code List
(Code)

Code List (Text)

Status

COSD

Breast - Referral. To carry additional Referral details for breast patients. (Multiple occurrences can be added as per core referrals)

Breast Referral Patient Status

Status of referral presentation for the patient

Code List

1

Screen detected

R

N/A

2

Symptomatic

Breast - Triple Diagnostic Assessment. To carry diagnostic details for Breast Cancer. (One occurrence per group)

Triple Diagnostic Assessment

Was a triple diagnostic assessment completed for the patient in a single visit, following initial referral?

Code List

1

Yes

M

Triple Diagnostic Assessment

2

No

9

Not Known

Breast - Key Investigations - Imaging. To carry additional imaging details for breast patients

Mammogram findings

Mammogram findings

Code List

1

Normal

R

N/A

2

Benign

3

Probably benign

4

Probably malignant

5

Malignant

Ultrasound findings

Ultrasound findings

Code List

1

Normal

R

N/A

2

Benign

3

Probably benign

4

Probably malignant

5

Malignant

Breast - Patient. To carry additional details relating to the patient. (One occurrence per group)

Discussion of Breast Conservation or Mastectomy

Was a discussion held with the patient regarding Breast Conservation or Mastectomy

Code List

Y

Yes

R

N/A

N

No

9

Not known

Date Breast Conservation or Mastectomy discussed

Record the date that discussions were held with the patient regarding Breast conservation or mastectomy

ccyymmdd

N/A

N/A

R

N/A

Discussion on Reconstruction options

Was a discussion held with the patient regarding Reconstruction options

Code List

Y

Yes

R

N/A

N

No

9

Not known

Reason for No Reconstruction Options Discussion

Specify the reason for not undertaking a discussion regarding reconstruction options with the patient

Code List

0

Patient Choice - Not Wanted

R

N/A

1

Patient Choice - Delayed Reconstruction

2

Patient Unsuitable - Comorbidities

3

Patient Unsuitable - BMI

4

Patient Unsuitable - Smoking History

5

Patient Unsuitable - Adjuvant Oncology

7

Other

9

Not Known

Date Reconstruction options were discussed

Record the date that discussions were held with the patient regarding reconstruction options

ccyymmdd

N/A

N/A

R

N/A

Provided with written/verbal information

Was the patient provided with Breast Conservation/Mastectomy/Reconstruction information

Code List

Y

Yes

R

N/A

N

No

9

Not recorded

Breast - Patient - Associated Risk Factors. To carry additional details related to the patient for breast specific risk factors. (One occurrence per group)

Hormone Replacement Therapy (HRT) Status

Record if the patient has ever received Hormone Replacement Therapy (HRT)

Code List

1

Never

R

N/A

2

Less than 5 Years

3

More than 5 years

Hormone Contraceptive Status

Record if the patient has ever received and taken any form of hormone contraceptive 

Code List

1

Never

R

N/A

2

Less than 5 Years

3

More than 5 years

Previous Breast Biopsy

Record if the patient has had any previous breast biopsies taken

Code List

Y

Yes

R

N/A

N

No

9

Not Known

Gravida

NHS Wales Data Dictionary

 

See Gravida

max n2

N/A

N/A

R

N/A

History of Breastfeeding

Did the patient breastfeed following the birth of the baby?

Code List

Y

Yes

R

N/A

N

No

9

Not Known

Clinical Nurse Specialist & Risk Factor Assessment (NABCOP). To carry assessment details for National Audit of Breast Cancer in Older Patients

Fitness Assessment Indicator

Indicate if there was a Fitness Assessment carried out on the patient.  If yes, please complete the following five data items.
These assessments and questions are for patients aged 70 and over at diagnosis

Code List

Y

Yes

R

Fitness Assessment Indicator

N

No

Fitness Assessment Date

The date the fitness assessment was completed

ccyymmdd

N/A

N/A

R

Fitness Assessment Date

Clinical Frailty Scale

Record the point on the Clinical Frailty Scale, as assigned by the appropriate clinician after discussion with the patient.  

Code List

1

Very fit

R

Clinical Frailty Scale

2

Well

3

Managing Well

4

Vulnerable

5

Mildly Frail

6

Moderately Frail

7

Severely Frail

8

Very Severely Frail

9

Terminally Ill

Abbreviated Mental Test Score

Record the total Abbreviated Mental Test Score, this should be a score from 0 to 10

max n2

(0-10)

 

R

Abbreviated Mental Test Score

CardioRespiratory Disease

Does the patient have severe cardiorespiratory disease?
Severe = Less than ordinary physical activity or rest causes tiredness, palpitation or shortness of breath

Code List

Y

Yes

R

CardioRespiratory Disease

N

No

Other Non Breast Locally Advanced/Metastatic Malignancy

Does the patient have any other Non-Breast Locally Advanced/Metastatic Malignancy

Code List

Y

Yes

R

Other Non Breast Locally Advanced/Metastatic Malignancy

N

No

Breast - Pathology. To carry additional pathology site specific items for breast. (One occurrence per Path Report)

DCIS (Ductal Carcinoma in Situ) Grade

If ductal carcinoma in situ is present, record the DCIS grade.  This is the cytonuclear grade.

Code List

H

High

R

DCIS (Ductal Carcinoma in Situ) Grade

I

Intermediate

L

Low

X

Not Assessable (Cannot be assessed)

Whole size of tumour (invasive + DCIS) size

Whole size of tumour (invasive + surrounding DCIS, if DCIS extends >1 mm beyond invasive) (mm).  For tumours without DCIS component this will be the same as invasive lesion size

max n3.max n2
(mm)

N/A

N/A

R

Whole size of tumour (invasive + DCIS) size

Grade of Differentiation (Pathological) *

Grade of Differentiation (Pathological) is the definitive grade of the tumour based on the evidence from a pathological examination

 

Note: In Core there is a code of G4 (Undifferentiated/anaplastic). That code is not applicable within the Breast site-specific standard.

Code List

G1

Well differentiated

R

Grade of Differentiation (Pathological)

G2

Moderately differentiated

G3

Poorly differentiated

GX

Grade of differentiation is not appropriate or cannot be assessed

DCIS/Pleomorphic or DCIS like LCIS Size

The size of the non-invasive tumour in mm.  This is only required if there is no invasive component

max n3.max n2
(mm)

N/A

N/A

R

DCIS/Pleomorphic or DCIS like LCIS Size

Multifocal Tumour indicator

Is there more than one discrete tumour identified in the same breast

Code List

Y

Yes (Multiple invasive foci)

R

Multifocal Tumour Indicator (Breast)

N

No (Localised)

9

Not Known (Cannot be assessed)

ER (Oestrogen Receptor) Status

Oestrogen Receptor Status

Note: A positive score means that oestrogen is causing the tumour to grow, and a negative score means that the tumour is not driven by oestrogen

Code List

P

Positive (> or = 1%)

R

ER Status

N

Negative (<1%)

X

Not Performed

ER Allred Score

ER Allred score

an1

Range of 0 or 2 - 8. Range does NOT include 1

N/A

N/A

O

ER Allred Score

PR (Progesterone Receptor) Status

To indicate whether the pathologist identified that the lesion was progesterone receptor positive.   Measure of progesterone receptor expression.   

Note:  This information is required regardless of whether the ER (Oestrogen Receptor) Status is Positive or Negative

Code List

P

Positive

R

PR Status

N

Negative

X

Not performed

PR Allred Score

Record the PR Allred score if ER Status is negative

Note:  This information is required regardless of whether the ER (Oestrogen Receptor) Status is Positive or Negative

an1

Range of 0 or 2 - 8. Range does NOT include 1

N/A

N/A

R

PR Allred Score

HER2 Status

 HER2 Immunohistochemical status (Human Epidermal Growth Factor Receptor 2).  Where the initial result of this test is "Borderline", a further report will follow with result of the ISH test

Code List

N1

Negative (0)

R

HER2 Status

N2

Negative (1+)

B

Borderline (2+)

P

Positive (3+)

X

Not Performed

HER2 ISH Status

Record the result of the ISH (in situ hybridization) test. 
This is only required if the initial HER2 status is 2 +/Borderline

Code List

P

Positive (Amplified)

R

HER2 ISH Status

N

Negative (Non-amplified)

B

Borderline 

X

Not Performed

Metastasis Extent Code
(Lymph Node)

For single node positivity, specify micrometastatic status as follows:  ITC's are only classified as node negative

Code List

2

Micrometastasis 

R

Metastasis Extent Code

3

Isolated tumour cells (ITC's)

4

Macrometastasis

9

Not known

Distance to Margin

Distance to closest relevant margin (mm). Distance to nearest margin whether invasive or non invasive

max n2.max n1

N/A

N/A

R

Distance to Margin

Cytology (Breast)

Cytology opinion (Breast)

Code List

C1

Inadequate/unsatisfactory specimen

R

Cytology (Breast)

C2

Benign

C3

Uncertain

C4

Suspicious of malignancy

C5

Malignant

Cytology (Node)

Cytology opinion on axillary lymph node

Code List

LC1

Inadequate/unsatisfactory specimen

R

Cytology (Node)

LC2

Benign

LC3

Uncertain

LC4

Suspicious of malignancy

LC5

Malignant

Core Biopsy (Breast)

Needle core biopsy opinion

Code List

B1

Unsatisfactory/normal tissue only

R

Core Biopsy (Breast)

B2

Benign

B3a

Uncertain malignant potential without epithelial atypia

B3b

Uncertain malignant potential with epithelial atypia

B4

Suspicious

B5a

Malignant  (In situ)

B5b

Malignant (Invasive)

B5c

Malignant (Not assessable)

Core Biopsy (Node)

Needle core biopsy opinion on axillary lymph node

Code List

LB1

Inadequate/unsatisfactory 

R

Core Biopsy (Node)

LB2

Normal/Benign

LB3

Uncertain

LB4

Suspicious

LB5

Malignant

Date of Breast/Node Biopsy/Cytology

Record the date the Biopsy/Cytology was taken

ccyymmdd

N/A

N/A

R

N/A

Other - Breast. Prognostic Index

NPI Score

Nottingham Prognostic Index Score (calculated from tumour size, grade and lymph node involvement)

max n2.max n2

N/A

N/A

M

NPI Score

Oncotype DX Test Status

Record if the Oncotype DX Genomic test has been undertaken for the patient.  
This test analyses the genomic profiling of the tumour which can determine how a cancer is likely to behave and respond to treatment

Code List

1

Performed

R

N/A

2

Not Performed

Oncotype DX Recurrence Score

Record the Oncotype DX recurrence score.  
This is used to provide information about how likely (or unlikely) the breast cancer is to come back, and a predictive test, since it predicts the likelihood of benefit from chemotherapy or radiation therapy treatment.
(Range 0-100)

n3
Range 0-100

N/A

N/A

O

N/A

Prosigna Score

Record the Prosigna Score.  

n3
Range 0-100

N/A

N/A

O

N/A

Prosigna Score Risk Score

Record the Risk Score from the Prosigna Score

Code List

1

Low Risk (0-40) Lymph node negative

O

N/A

2

Intermediate Risk (41-60) Lymph node negative

3

High Risk (61-100) Lymph node negative

4

Low Risk (0-40) Lymph node positive

5

High Risk (41-100) Lymph node positive

EndoPredict (EP clin score)

Record the EndoPredict EP clin Score

n5
Range 1.1-6.2 with up to 4 digits after decimal point (eg 3.3287)

N/A

N/A

O

N/A