Information Specification

The data items required for National Cancer Data Standards for Wales – Systemic Anti-Cancer Therapy (SACT) and their equivalent labels in SACT V3.0.2, 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).

 

 

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 – Systemic Anti-Cancer Therapy (SACT)

 

Reporting Data Item

Definition

Format

Code List (Code)

Code List (Text)

Status

SACT

 

DEMOGRAPHICS AND CONSULTANT.  To carry details for the Demographics and Consultant.  May be up to one occurrence per submission

NHS Number

NHS Wales Data Dictionary (NHS Number)

NHS Wales Data Dictionary

 

See NHS Number

N/A

N/A

M

NHS Number (1)

 

Local Patient Identifier

NHS Wales Data Dictionary (Local Patient Identifier)

NHS Wales Data Dictionary

 

See Local Patient Identifier

N/A

N/A

M

Local Patient Identifier (44)

 

NHS Number Status Indicator

NHS Wales Data Dictionary (NHS Number Status Indicator)

Code List

 

See NHS Number Status Indicator

NHS Wales Data Dictionary

NHS Wales Data Dictionary

M

NHS Number Status Indicator Code (43)

 

Person Family Name - Surname

The patients surname used to describe family, clan or marital association

max an35

N/A

N/A

R

Person Family Name (45)

 

Person Given Name - Forename

The persons forename(s) or given name(s)

max an35

N/A

N/A

R

Person Given Name (46)

 

Date Of Birth/Birth Date

NHS Wales Data Dictionary (Birth Date)

ccyymmdd

 

See Birth Date

N/A

N/A

M

Date of Birth (2)

 

Sex (At Birth)

NHS Wales Data Dictionary (Sex)

Code List

 

See Core Reference Data Standards

F

Female

R

N/A

 

I

Indeterminate 

 

M

Male

 

Z

Not disclosed or Unknown (e.g. for unborn baby)

 

Person Stated Gender Code
(Gender Identity)

NHS Wales Data Dictionary (Gender)

Code List

 

See Core Reference Data Standards

F

Female

R

Person Stated Gender Code (47)

 

M

Male

 

N

Non-Binary 

 

Z

Not disclosed or Unknown (e.g. for unborn baby)

 

Patient Postcode

NHS Wales Data Dictionary (Postcode of Usual Address)

At admission, attendance, or diagnosis

NHS Wales Data Dictionary

 

See Postcode of Usual Address

N/A

N/A

M

Patient Postcode (5)

 

Consultant GMC Code

NHS Wales Data Dictionary (Consultant Code)

Code of consultant who initiated SACT programme

NHS Wales Data Dictionary

 

See Consultant Code

N/A

N/A

R

Consultant GMC Code (7)

 

Consultant Specialty Code

NHS Wales Data Dictionary (Main Specialty (Consultant)

Specialty code of consultant who initiated SACT programme

Main specialities relevant to SACT are 370 Medical Oncology, 800 Clinical Oncology, 823 Haematology and 420 Paediatrics

NHS Wales Data Dictionary

 

See Main Specialty (Consultant)

N/A

N/A

R

Consultant Specialty Code (8)

 

Organisation Identifier (Code Of Provider)

The organisation identifier of the Organisation acting as a Health Care Provider.

See Organisation Code - LHB/Trust Site Code

N/A

N/A

M

Organisation Identifier (Code Of Provider) (9)

 

CLINICAL STATUS.  To carry details for Clinical Status.  May be up to one occurrence per submission. 

Primary Diagnosis

Primary diagnosis at time of decision to treat.   
The primary diagnosis is normally agreed at the MDT meeting where the patient is discussed

For the Systemic Anti-Cancer Therapy Data Set, this is the Primary Diagnosis at the start of the Systemic Anti-Cancer Therapy.

min an4 max an6

N/A

N/A

M

Primary Diagnosis (10)

 

Morphology ICD-O

Morphology ICD-O at time of decision to treat.

For the Systemic Anti-Cancer Therapy Data set this is the Morphology ICD-O at the start of the Systematic Anti-Cancer Therapy, this is a requirement for Haematology

For linkage purposes Primary Diagnosis and/or Morphology ICD-O are required.

min an5 max an7

N/A

N/A

M

Morphology ICD-O (11)

 

Diagnosis Code (SNOMED CT)

DIAGNOSIS CODE (SNOMED) is the SNOMED concept ID which is used to identify the clinical diagnosis given to the patient.

min n6 max n18

N/A

N/A

O

Diagnosis Code (SNOMED CT) (48)

 

Organisation Site Identifier (Of Diagnosis)

NHS Wales Data Dictionary

The organisation site where the patient diagnosis took place

See Organisation Code - LHB/Trust Site Code

N/A

N/A

M

N/A

 

PROGRAMME AND REGIMEN.  To carry details for the Programme and Regimen.  May be up to one occurrence per submission

Start of repeating item - INTENT OF TREATMENT.  Multiple occurrences of this item are permitted

Intent Of Treatment

The intention of the SACT regimen provided during a treatment Spell.

Note: The adjacent codes differ to those in SACT V3.0.2 in order to provide the specific reporting requirements within Wales

Code List

01

Curative - to give the best possible chance of being cured

R

Intent Of Treatment (15)

 

02

Palliative/Disease Control - the aim is not to cure but to control or shrink the disease.  The aim is to improve both quality of life and survival

 

03

Adjuvant - therapy given after surgery to reduce the risk of the cancer coming back

 

04

Neo-Adjuvant - therapy given before surgery/radiotherapy to shrink the cancer, allow radical treatment and reduce the risk of the cancer coming back

 

05

To obtain or maintain remission (for Haematology Only)

 

99

Not Known

 

End of repeating item - INTENT OF TREATMENT

Priority

Record the priority of the treatment in order to measure treatment targets as part of optimal pathways

Code List

1

Emergency/Priority 1 - emergency (within 48 hours)

R

N/A

 

2

Urgent/Priority 2 -  within 14 days (for Curative, Palliative/Disease Control, Haematology remission and Neoadjuvant  intent)

 

3

Routine/Priority 3 - within 21 days (for adjuvant intent)

 

Regimen

The acronym derived from the drugs used in the Anti-Cancer Drug Regimen used to identify the drugs used in the regimen

max an150

N/A

N/A

M

Regimen (16)

 

Height At Start Of Regimen

Height in metres at start of SACT regimen

max n1. max n2

N/A

N/A

R

Height At Start Of Regimen (17)

 

Weight At Start Of Regimen

Weight in kilogrammes at start of SACT regimen

max n3.max n3

N/A

N/A

R

Weight At Start Of Regimen (18)

 

Performance Status At Start Of Regimen - Adult

A World Health Organisation classification indicating a person's status relating to activity / disability

This is to be used for all patients aged 19yrs and above

Code List

0

Able to carry out all normal activity without restriction

R

Performance Status At Start Of Regimen - Adult (50)

 

1

Restricted in strenuous activity but ambulatory and able to carry out light work

 

2

Ambulatory and capable of all self-care but unable to carry out any work activities; up and about more than 50% of waking hours

 

3

Symptomatic and in a chair or in bed for greater than 50% of the day but not bedridden

 

4

Completely disabled. Cannot carry on any self care. Totally confined to bed or chair

 

Co-Morbidity Adjustment

Whether or not patient's overall physical state (other diseases and conditions) was a significant factor in deciding on regimen, or in varying the dose or treatment interval

Code List

Y1

Yes - Alternate Regimen Chosen

R

Co-Morbidity Adjustment (20)

 

Y2

Yes - Dose Adjustment to First Choice Regimen

 

Y3

Yes - Alternate Regimen Chosen and Dose Adjustment Made

 

N

No

 

Date Decision To Treat

This is the date the patient agrees with the clinician to have treatment

ccyymmdd

N/A

N/A

M

Date Decision To Treat (21)

 

Start Date Of Regimen

This is the first administration date of the first cycle of a regimen

ccyymmdd

N/A

N/A

M

Start Date Of Regimen (22)

 

Clinical Trial

To enable the recording of when a patient is currently in an active Systemic Anti Cancer Therapy trial

Code List

01

Patient is taking part in a SACT clinical trial

R

Clinical Trial (23)

 

02

Patient is not taking part in a SACT clinical trial

 

99

Not Known

 

CYCLE.  To carry details for the drug Cycle.  May be multiple occurrences per submission. 

Cycle Number

Cycles numbered sequentially within each regimen

Refer to the user guide for additional cycle information

max n3

N/A

N/A

R

Cycle Number (26)

 

Start Date Of Cycle

Date of first drug administration in each cycle

ccyymmdd

N/A

N/A

M

Start Date Of Cycle (27)

 

Weight At Start Of Cycle

Weight in kilogrammes at start of the cycle

max n3.max n3

N/A

N/A

R

Weight At Start Of Cycle (28)

 

Performance Status At Start Of Cycle - Adult

A World Health Organisation classification indicating a person's status relating to activity / disability

This is to be used for all patients aged 19yrs and above

Code List

0

Able to carry out all normal activity without restriction

R

Performance Status At Start Of Cycle - Adult (51)

 

1

Restricted in strenuous activity but ambulatory and able to carry out light work

 

2

Ambulatory and capable of all self-care but unable to carry out any work activities; up and about more than 50% of waking hours

 

3

Symptomatic and in a chair or in bed for greater than 50% of the day but not bedridden

 

4

Completely disabled. Cannot carry on any self care. Totally confined to bed or chair

 

DRUG DETAILS.  To carry the drug Details for the patients treatment.  May be multiple occurrences per submission

Drug Name

The name is taken from the British National Formulary

Refer to the user guide for additional drug detail information

max an55

 

 

M

Drug Name (31)

 

DM+D

This is the unique ID from the dm+d database, based around the drug name/manufacture. 

 

min n6 max n18

 

 

O

DM+D (52)

 

Actual Dose Per Administration

Dose in mg or other applicable unit for each administration in a SACT cycle.

max n8

 

 

R

Actual Dose Per Administration (32)

 

Administration Measurement Per Actual Dose

Units of measurements used for each administration in a SACT cycle.

an2

01

mg (Milligram)

R

Administration Measurement Per Actual Dose (53)

 

02

mcg (Microgram)

 

03

g (Gram)

 

04

Units

 

05

Cells

 

06

x10^6 PFU

 

07

x10^8 PFU

 

98

Other

 

99

Not Known

 

Other - Administration Measurement Per Actual Dose

Record other 'unit of measurement' not available within [administration measurement per actual dose] field, if option 98 is selected

Max an15

 

 

R

Other - Administration Measurement Per Actual Dose (54)

 

Unit Of Measurement (SNOMED CT DM+D)

The SNOMED  concept ID from the NHS Dictionary of Medicines and Devices which is used to identify the unit of measurement

min n6 max n18

 

 

O

Unit Of Measurement (SNOMED CT DM+D) (55)

 

SACT Administration Route

The prescribed method of delivery for each administration in a SACT cycle

an2

01

Intravenous

R

SACT Administration Route (33)

 

02

Oral

 

03

Intrathecal

 

04

Intramuscular

 

05

Subcutaneous

 

06

Intraarterial

 

07

Intraperitoneal

 

08

Other intracavity Intracavernous

 

09

Intravesical (Intra-Vesicular)

 

11

Cutaneous (Topical)

 

12

Intradermal

 

13

Intratumour

 

14

Intralesional

 

98

Other

 

Route Of Administration (SNOMED CT DM+D)

The SNOMED concept ID from the NHS Dictionary of Medicines and Devices which is used to identify the route of administration

min n6 max n18

N/A

N/A

O

Route Of Administration (SNOMED CT DM+D) (56)

 

Administration Date

The date on which the anti-cancer drug was administered to a patient, an infusion commenced, or an oral drug initially dispensed to the patient

ccyymmdd

N/A

N/A

M

Administration Date (34)

 

Organisation Identifier Of SACT Administration

Organisation Identifier of the organisation for each administration in a SACT cycle

See Organisation Code - LHB/Trust Site Code

N/A

N/A

R

Organisation Identifier Of SACT Administration (35)

 

OUTCOME.  To carry the Outcome Details applicable to the patients treatment.  May be up to one occurrence per submission. 

Regimen Modification - Dose Reduction

Identifies if a regimen was modified by reducing the dose of any anti-cancer drug administered at any point in the regimen after commencement of the regimen

Code List

Y

Yes

R

Regimen Modification - Dose Reduction (38)

 

N

No

 

Regimen Outcome Summary - Curative (Completed As Planned)

An indicator of whether the curative treatment was completed as planned

Note: Only for completion where Intent of Treatment is recorded as Curative

Code List

Y

Yes

R

Regimen Outcome Summary - Curative (Completed As Planned) (57)

 

N

No

 

Regimen Outcome Summary - Curative (Completed As Planned - Deviation In Timescale)

Did the completed plan deviate from original treatment timescales?

Code List

Y

Yes

R

N/A

 

N

No

 

Regimen Outcome Summary - Curative (Completed As Planned - Reasons For Delay)

Specify the reason for the deviation to the treatment timescales

Note: Only for completion when Regimen Outcome Summary - Curative (Completed As Planned - Deviation In Timescale) is recorded as Yes
 

Code List

01

Patient Related Reasons/Factors

R

N/A

 

02

Service Related Reasons/Factors

 

Start of repeating item - REGIMEN OUTCOME SUMMARY - CURATIVE (NOT COMPLETED AS PLANNED).  Multiple occurrences of this item are permitted

Regimen Outcome Summary - Curative (Not Completed As Planned) Reason

To record the reason why the curative treatment was not completed as planned

Note: Only for completion when Regimen Outcome Summary - Curative (Completed As Planned) is recorded as No

Code List

1

Progressive/recurrent cancer

R

Regimen Outcome Summary - Curative (Not Completed As Planned) Reason (58)

 

2

Toxicity

 

3

Death

 

4

Patient choice

 

5

Other

 

End of repeating item - REGIMEN OUTCOME SUMMARY - CURATIVE (NOT COMPLETED AS PLANNED)

Other - Regimen Outcome Summary - Curative (Not Completed As Planned) Reason

Record other reasons why the curative treatment was not completed as planned

Note: Only for completion when Regimen Outcome Summary - Curative (Not Completed As Planned) Reason is recorded as Other

max an55

N/A

N/A

R

Other - Regimen Outcome Summary - Curative (Not Completed As Planned) Reason (59)

 

Regimen Outcome Summary - Non Curative

An indicator of whether the patient benefited from the non-curative treatment

Note: Only for completion where Intent of Treatment is recorded as Palliative/Disease Control

Code List

Y

Yes

R

Regimen Outcome Summary - Non Curative (60)

 

N

No

 

Regimen Outcome Summary - Toxicity

An indicator of whether Toxicity was a deciding factor in modifying the treatment regimen

Code List

Y

Yes

R

Regimen Outcome Summary - Toxicity (61)

 

N

No

 

Start of repeating item - REGIMEN OUTCOME SUMMARY - TOXICITIES.  Multiple occurrences of this item are permitted

Regimen Outcome Summary - Toxicities

Specify the toxicities that led to the modification in the treatment regimen

Code List

01

Allergic Reaction

R

N/A

 

02

Autoimmunity

 

03

Bone Marrow Suppression

 

04

Cardiotoxicity

 

05

Death

 

06

Diarrhoea

 

07

Endocrinopathy

 

08

Extravasation

 

09

Fatigue and/or Performance Status

 

10

Haemorrhagic Cystitis

 

11

Hepatotoxicity

 

12

Infection

 

13

Infusion Related Reactions

 

14

Mucositis

 

15

Myalgia

 

16

Nausea & Vomiting

 

17

Neurotoxicity

 

18

Ototoxicity

 

19

Pulmonary

 

20

Nephrotoxicity

 

21

Sepsis

 

22

Skin Reactions

 

23

Vascular

 

98

Other

 

End of repeating item - REGIMEN OUTCOME SUMMARY - TOXICITIES

Regimen Outcome Summary - Other Toxicities

Record other toxicities that led to the modification in the treatment regimen

Note: Only for completion when Regimen Outcome Summary - Toxicities is recorded as Other

max an55

N/A

N/A

R

N/A