squamous cell carcinoma - isd scotland€¦ · the definitions for squamous cell carcinoma are...

National Data Definitions for Minimum Core Data Set for Squamous Cell Carcinoma Developed by ISD Scotland in collaboration with the Regional Cancer Networks, December

2006 (version 1)

Squamous Cell Carcinoma

Data Definitions for the National Minimum Core Data Set

Definitions developed by ISD Scotland in Collaboration with the Regional

Cancer Networks

Version 1: December 2006

The National Clinical Data Set Development Programme (NCDDP) is part of

national eHealth Strategy and aims to standardise data items across

NHSScotland, where it is feasible. Work is ongoing looking at items that are

generic to all settings e.g. demographics, and cancer generic and site specific

areas. (<http://www.show.scot.nhs.uk/clinicaldatasets/>) Items that are being agreed or are

underdevelopment as part of the programme are highlighted in the document.

National Data Definitions for Minimum Core Data Set for Squamous Cell Carcinoma Developed by ISD Scotland in collaboration with the Regional Cancer Networks, December 2006

(version 1)

PREFACE ............................................................................................................. i

CONVENTIONS ................................................................................................... ii

REVISIONS TO DEFINITIONS ........................................................................ ii

CRITERIA FOR INCLUSION OF PATIENTS IN AUDIT ............................ ii

IDENTIFICATION OF PATIENTS FOR AUDIT ........................................... iii

DATABASE SPECIFICATION ......................................................................... iv

Section 1: Patient Identifiers .............................................................................................. 1

Naming standards .............................................................................................. 2

Structured Name ................................................................................................................. 2

Person Family Name ........................................................................................... 4

Person Given Name ............................................................................................. 5

Patient Address at Diagnosis {Cancer} ..................................................... 6

Patient Postcode at Diagnosis {Cancer}................................................... 7

Person Birth Date ................................................................................................. 8

Person Sex at Birth ........................................................................................... 10

Location of Diagnosis {Cancer} .................................................................. 11

Health Record Identifier .................................................................................. 12

CHI Number ........................................................................................................... 13

Registered GP Practice Code ....................................................................... 14

HOSPITAL CLINICIANS AND REFERRAL DETAILS ............... 15

Date of cancer referral ..................................................................................... 15

Date Referral Received .................................................................................... 16

Source of cancer referral ................................................................................ 17

Urgency of cancer referral ............................................................................. 18

Seen by GP Only {Squamous cell carcinoma} ..................................... 19

Section 2: Hospital Clinicians and Specialties ............................... 20

Clinician in Charge {Squamous cell carcinoma} ................................ 21

Clinician 1-4 .......................................................................................................... 22

Specialty of Clinician 1-4 ................................................................................ 23

Date of First Seeing Clinician 1-4 ............................................................... 25

Section 3: Presentation Details ............................................................. 26

Duration of Lesion {Squamous cell carcinoma} ................................. 27

Laterality {Cancer} ............................................................................................. 28

Site of Tumour ..................................................................................................... 29

Clinical Largest Diameter {Squamous cell carcinoma} ................... 30

Date of Diagnosis {Squamous Cell Carcinoma} ................................. 31

Most Valid Basis of Diagnosis {Cancer} ................................................. 32

Patient Immunosuppressed {Squamous cell carcinoma} .............. 33

Previous Biopsy {Squamous cell carcinoma} ...................................... 34


(version 1)

Section 4: Surgery ....................................................................................... 35

Surgery Performed 1-4 {Squamous Cell Carcinoma} ....................... 36

Date of Surgery {Cancer} ................................................................................ 37

Location Code (Cancer surgery) ................................................................. 38

Regional Node Dissection Performed {Squamous cell

carcinoma} ............................................................................................................. 39

Date of Regional Node Dissection {Squamous cell carcinoma} . 40

Section 5: Pathology................................................................................... 41

Histo/ Cytopathology Report Number ...................................................... 42

Location Code (Pathology) ............................................................................ 43

Date Histo/ Cytopathological Specimen Taken ................................... 45

Histo/ Cytopathology Investigation Report Date ................................ 46

Number of lymph Nodes Examined - ....................................................... 47

Number of Non-Sentinel Nodes Involved ............................................... 48

Lymphatic/Blood Vessel Invasion .............................................................. 49

Perineural Invasion............................................................................................ 50

Distance from Peripheral Margin ................................................................ 51

Distance from Deep Margin ........................................................................... 52

Tumour Type (Morphology of Tumour) {Cancer} ............................... 53

Histological Sub-type ....................................................................................... 54

Degree of Differentiation {Squamous cell carcinoma} .................... 55

TNM Tumour Classification (Pathological) {Squamous cell

carcinoma} ............................................................................................................. 56

TNM Nodal Classification (Pathological) {Squamous cell

carcinoma} ............................................................................................................. 57

TNM Metastases Classification (Pathological) {Squamous cell

carcinoma} ............................................................................................................. 58

Depth of Tumour {Squamous cell carcinoma} ..................................... 59

Length of Tumour {Squamous cell carcinoma} .................................. 60

Breadth of Tumour {Squamous cell carcinoma} ................................ 61

Level of Invasion {Squamous cell carcinoma} .................................... 62

Date of Further Referral (Cancer) ............................................................... 63

Location of further referral (cancer) ......................................................... 64

Section 6 : Waiting Times Data Items ................................................ 65

Type of first cancer treatment ...................................................................... 66

Date of first cancer treatment ...................................................................... 67

Reason(s) for delays in starting first cancer treatment ................... 68

Section 7: Metastases and Death Details ........................................ 69


(version 1)

Site of Metastases at Presentation {Squamous cell carcinoma} 70

Local Nodes at Presentation {Squamous cell carcinoma} ............ 71

Disseminated Disease at Presentation {Squamous cell

carcinoma} ............................................................................................................. 72

Person Death Date ............................................................................................. 73

Underlying Cause of Death ............................................................................ 74

Appendix 1 - Squamous Cell Neoplasms ........................................................................ 75


(version 1)

i

PREFACE To ensure high quality data is collected to allow comparison over time and between regions, it is important that national data definitions are used that will enable consistent data to be collected across Scotland. National data definitions already in use have been used, wherever possible, to allow data capture electronically and thereby minimise duplication of data collection. Where national data definitions do not already exist definitions used in other systems have been incorporated, or new definitions agreed in consultation with the Regional Cancer Networks. The definitions for squamous cell carcinoma are aligned with those for the national melanoma data set. In some situations the definition that has already been implemented for melanoma has been used rather than a recently developed NCDDP standard. This is to enable consistency between datasets. Dr Valerie Doherty Chairperson Scottish Melanoma Group, Chair Skin SCAN Group.


(version 1)

ii

CONVENTIONS In the following definitions the layout for each item is standard. Two conventions have been used in the document as follows:

{curly brackets} - definition relates to one specific named data set

'described elsewhere' - indicates there is a definition for the named item within this document

REVISIONS TO DEFINITIONS Each page is date stamped to allow changes in definitions to be traced; original definitions should be retained to assist with any later analysis covering that period. All feedback on this document is welcome and should be forwarded to the Cancer Information Coordinator as detailed below in this document.

CRITERIA FOR INCLUSION OF PATIENTS IN AUDIT To facilitate national comparisons the same patients must be audited throughout Scotland. The following eligibility criteria have been documented for this purpose.

Include

All patients with a confirmed new primary invasive squamous cell carcinoma of the skin. This includes patients who have had a previous primary malignancy of any cancer site or a concurrent primary malignancy of another cancer site. Departments should consider adding a flag to a record so that details of separate primary tumours can be linked for clinic purposes e.g. the multidisciplinary meeting.

All patients with normal residence in Scotland even if they only received part of their therapy within a health board/region.

Exclude

Basal cell carcinoma.

In-situ squamous cancers.

Patients with recurrent disease (as opposed to a new primary).

Patients with normal residence outwith Scotland.

Notes:

1. It is the responsibility of the hospital where the patient was diagnosed, or

followed up if the GP excised the tumour, to identify patients and collect data for

audit, even though the patient may receive treatment in more than one hospital,

and submit the completed record for national quality assurance and comparative

reporting.

2. A record should be included for each new primary.


(version 1)

iii

IDENTIFICATION OF PATIENTS FOR AUDIT It is recognised that patients may present for treatment through a variety of routes and may be difficult to identify the whole population. It is suggested that some of the following should be used to identify patients:

Pathology listings

Notifications via the Multidisciplinary Team Meetings

‘Coding’ – Scottish Morbidity Records (SMR)

General Registrar Office (GRO) death data

Departmental databases and registers

Notifications from Clinical Nurse Specialists By using a number of sources case ascertainment should be increased. To facilitate this process ISD Scotland has set up a mechanism for routinely providing provisional cancer registrations for all cancer audits. These registrations will link together in a single record pathology, GRO, SMR and other notifications of cancer. In each network area named contacts will be provided with provisional registrations (for further details please contact the Cancer Information Coordinator in ISD – see below for contact details).

QUERIES AND HELP WITH DEFINITIONS

If you have difficulties in using individual definitions within this document please contact:

Jean Harvey Cancer Data Definitions Manager ISD Scotland e-mail: [email protected]

GENERAL ENQUIRIES If you have any comments on the attached data definitions ISD Scotland would welcome the feedback. Comments should be forwarded to:

Kathy Clarke Cancer Information Coordinator ISD Scotland e-mail: [email protected]

The National Clinical Data Set Development Programme (NCDDP) is part of national

eHealth Strategy and aims to standardise data items across NHSScotland, where it is

feasible. Work is ongoing looking at items that are generic to all settings e.g.

demographics, and cancer generic and site specific areas. (<http://www.show.scot.nhs.uk/clinicaldatasets/>) Items that are being agreed or are underdevelopment as part of the programme are highlighted in the document.

mailto:[email protected]

mailto:[email protected]


(version 1)

iv

DATABASE SPECIFICATION

Data Item FIELD NAME Field

Type

Size Definition

and

codes on

page

Patient identifiers

Person Family Name PATSNAME Text 35 4

Patient Given Name PATFNAME Text 35 5

Patient Address at Diagnosis {Cancer}

PATADD(1-4) Text 150 6

Patient Postcode at Diagnosis PATPCODE Text 8 7

Person Birth Date DOB Date/Time 10 9

Person Sex at Birth SEX Number (Byte)

1 10

Location of Diagnosis HOSP1 Text 5 11

Health Record Identifier UNITNUM Text 14 12

CHI Number CHINUM Text 10 13

Registered GP Practice Code GPREF Text 6 14

Date of Cancer Referral REFDATE Date/Time 10 15

Date Referral Received REFRECVD Date/Time 10 16

Source of Cancer Referral MREFER Number (Byte)

2 17

Urgency of Cancer Referral URGENCYREF Number (Byte)

2 18

Seen by GP Only GPONLY Number (Byte)

2 19

Hospital Clinicians and Specialties

Clinician in Charge CONS Text 20 21

Clinician 1-4 CLINAM 1 - 4 Text 20 22

Specialty of Clinician 1-4 CLINSPEC 1 -- 4 Text 3 23

Date of Seeing First Clinician 1-4 FCLINDATE1-4 Date/Time 8 25

Presentation Details

Duration of Lesion DURATION Number (Byte)

2 27

Laterality SIDE Number (Byte)

2 28

Site of Tumour SITE Number (Byte)

2 29

Clinical Largest Diameter of Tumour

CLINDIA Number (Integer)

4 30

Date of Diagnosis DDATE Date/Time 8 31

Most Valid Basis of Diagnosis VALID Number (Byte)

2 32

Patient Immunosuppressed IMMUNOSUP Number (Byte)

2 33

Previous Biopsy PREVBIOPSY Number (Byte)

2 34


(version 1)

v

DATABASE SPECIFICATIONS (contd) Data Item FIELD NAME Field

Type Size Definition

and

codes on

page

Surgery

Surgery Performed 1-4 SURG1 Number (Byte)

1 36

Date of Surgery DSURG1 Date/Time 10 37

Location Code (Cancer Surgery) LOCSURG Text 5 38

Regional Node Dissection Performed

REGNODE Number (Byte)

2 39

Date of Regional Node Dissection DREGNODE Date/Time 10 40

Pathology

Histo/ Cytopathology Report Number

PATHNUM Text 20 42

Location Code (Pathology) PATHLAB Text 5 43

Date Histo/ Cytopathological Specimen Taken

DSPECIMEN Date/Time 10 45

Histo/ Cytopathology Investigation Report Date

INVESTRDATE Date/Time 10 46

Number of Lymph Nodes Examined

NNODES Number (Integer)

4 47

Number of Non-sentinel Nodes Involved

NONNSINVNODES Number (Integer)

4 48

Lymphatic/Blood Vessel Invasion LYMPHINVAS Number (Byte)

2 49

Perineural Invasion PNINVAS Number (Byte)

2 50

Distance from Peripheral Margin PERMARGIN Number (Byte)

2 51

Distance from Deep Margin DEEPMARGIN Number (Byte)

2 52

Tumour Type (Morphology of Tumour)

MORPHOL Text 5 53

Histological Sub-type HSUBTYPE Number (Byte)

2 54

Degree of Differentiation DIFFERENT Number (Byte)

2 55

TNM Tumour Classification (Pathological)

pT

Text 2 56

TNM Nodal Classification (Pathological)

pN Text 2 57

TNM Metastases Classification (Pathological)

pM Text 2 58

Depth of Tumour TUMDEPTH Number (Integer)

2 59

Length of Tumour TUMLENGTH Number (Integer)

2 60

Breadth of Tumour TUMBREADTH Number (Integer)

2 61


(version 1)

vi

Level of Invasion LEVINVASIV Number (Byte)

2 62

Date of Further Referral DFURTHERREF Date/Time 10 63

Location of Further Referral LFURTHERREF TEXT 5 64

Type of First Cancer Treatment MODE Number (Byte)

2 66

Date of First Cancer Treatment FIRSTTREATDATE Date/Time 8 67

Reason for Delay in Starting First Cancer Treatment

DELAY Number (Byte)

1 68

Metastases and Death Details

Site of Metastases at Presentation (Local Disease)

LOCDIS Number (Byte)

2 70

Local Nodes at Presentation LOCNODE Number (Byte)

2 71

Disseminated Disease at Presentation

DISSEM Number (Byte)

2 72

Date of Death DOD Date/Time 10 73

Primary Cause of Death COD Number (Byte)

1 74


(version 1)

1

Section 1: Patient Identifiers


(version 1)

2

Naming standards Generic Data Standard There are two alternative ways of recording person names. The structured name approach breaks names down into specific elements, with start and end dates for each one, and facilitates electronic inter-agency sharing and exchange of name information. There are also start and end dates associated with name status so that data users can track changes to name status (e.g. when a name is changed by deed poll, when name changes through marriage or divorce etc.). Name Element position is helpful in identifying particular name elements within the entire word string (e.g. family name in Asian names does not necessarily come at the end – Asian names can be presented in different sequences according to the person being addressed).

The unstructured name approach records the name in a single unstructured concatenation of some or all of the elements that make up a person’s full name. It may be appropriate as an alternative to structured name recording where:

Care provider IT systems cannot handle structured name recording

The person recording the data does not know which of the name words is the family name and which are forenames

Note: Structured name recording should always be the preferred option. Name should only be recorded in an unstructured fashion when it is the only means of recording the name.

Structured Name

Person Family Name

Person Title

Name Element Position

Person Name Status

Preferred Name

Previous Person Family Name

Person Given Name

Person Initials

Person Preferred Forename

Person Name Suffix

Definition: An ordered sequence of person name elements such as title, forename(s) and family name.

Recording guidance: The structured name approach breaks names down into specific elements, with start and end dates for each one (with the exception of Preferred Name), and facilitates electronic inter-agency sharing and exchange of name information. There are also start and end dates associated with name status so that data users can track changes to name status

http://80.75.66.188/isddd/servlet/controller?p_service=Content.show&p_applic=CCC&pContentID=11130











(version 1)

3

(e.g. when a name is changed by deed poll, when name changes through marriage or divorce etc.). Name Element Position is helpful in identifying particular name elements within the entire word string (e.g. family name in Asian names does not necessarily come at the end - Asian names can be presented in different sequences according to the person being addressed).

This is an approved NCDDP data standard.


(version 1)

4

Person Family Name

Common Name(s): Surname, Family name

Main Source of Standard: Government Data Standards Catalogue

Definition: That part of a person's name which is used to describe family, clan, tribal group, or marital association.

Format: Characters

Field Length: 35

Sub Data Items: Name Element Position Start and End dates

Further Information: Main Source of Standard:Government Data Standards Catalogue The surname of a person represents that part of the name of a person indicating the family group of which the person is part. It should be noted that in Western culture this is normally the latter part of the name of a person. However, this is not necessarily true of all cultures. This will, of course, give rise to some problems in the representation of the name. This is resolved by including the data item Name Element Position in the structured name indicating the order of the name elements. From SMR Definitions and Codes.


Equivalent to Patient Surname in Melanoma dataset.




(version 1)

5

Person Given Name

Common Name(s): Forename, Given Name, Personal Name


Definition: The forename or given name of a person.

Format: Characters

Field Length: 35

Sub Data Items: Start and End dates Name Element Position

Further Information: Main Source of Standard:Government Data Standards Catalogue The first forename of a person represents that part of the name of a person which after the surname, is the principal identifier of a person.

Recording Guidance: A person can have multiple occurrences of a given name, the order of which is identified by the sub data item 'Name Element Position'. Where the person's preferred forename is not the first forename, the related data item 'Preferred Forename' should be used to indicate this.


Equivalent to Patient Forename in Melanoma dataset.




(version 1)

6

Patient Address at Diagnosis {Cancer}

Definition: Address of patient's usual place of residence on the date of diagnosis.

Format: Address (BS7666) see Government Data Standards website.

Related Data Items: Cancer Registration Incidence Date {Cancer}, Address (BS7666)

Further Information: The address recorded should be the patient’s normal address at the time of the Cancer Registration Incidence date. The address should be recorded as `No fixed abode' or 'Address unknown' where this is the case. If a patient has more than one address e.g. students, prisoners, members of the Armed Forces etc., the address at which the person resides for the majority of the time must be accepted. Thus, for example, a student’s residence should be regarded as their term time address.


Equivalent to Patient Address at Diagnosis in Melanoma dataset.




(version 1)

7

Patient Postcode at Diagnosis {Cancer}

Definition: Postcode of patient's usual place of residence on the date of diagnosis.

Format: Characters

Field Length: Maximum 8

Related Data Items: Cancer Registration Incidence Date {Cancer}, Patient Address at Diagnosis {Cancer}, Address (BS7666)

Further Information: Postcode is included in BS7666 Address (GDSC) but there is also a separate Post Code standard which will be populated from BS7666 Address Post Code. This item can be derived from the date of diagnosis and patient address at that time


Equivalent to Patient Postcode in Melanoma dataset.





(version 1)

8

Person Birth Date

Common Name(s): Date of Birth


Definition: The date on which a person was born or is officially deemed to have been born, as recorded on the Birth Certificate.

Format: Characters (CCYY-MM-DD)

Field Length: 10

Codes and values: N/A

Sub data items: Verification level: Government Data Standards Catalogue Verification

Code Value

Level 0 Not Verified

Level 1 One or more of the following Secondary certificates:

Certificate of Baptism. Marriage Certificate National Health Service Medical Card Child's Certificate of Vaccination Child's Health Record Card A certificate of Service in HM Forces or other employment under the Crown or in the Mercantile Marine. A certificate of membership of a Trade Union Friendly Society or any cards or papers relating to membership of an Approved Society or Unemployment Insurance Apprenticeship indentures. Early certificate or testimonial from employer. Aliens registration card, certificate of naturalisation, Home Office travel document or a passport. Life insurance policy. Certificate of confirmation. School certificate or report. A birthday book or old family record. Family Bible containing a record of birth.

Level 2 One of the following:

Full birth certificate. Birth certificate short form. Certificate of registry showing given names and family ame. GRO copy. Adoption Order issued by the High Court, County Court or Juvenile Court. Certificate of adoption issued by the GRO. Foreign birth certificate issued by registration authority of the foreign country.

http://www.govtalk.gov.uk/gdsc/html/noframes/default.htm


(version 1)

9

Further information: The Government Data Catalogue Standards recommends that verification of a birth date should always be carried out if feasible.

Recording guidance: A notional birth date may be recorded where an informant has reported an approximate age for a person whose actual date of birth is unknown. This should be identified using verification level ‘0’. Work is currently being done on a recording convention for dates where only the month and year, or only the year, is available. If Birth Verification Type is level 1 or 2, then the Person Birth Date cannot be amended.


Equivalent to Date of Birth in Melanoma dataset.


(version 1)

10

Person Sex at Birth

Common Name(s): Sex at Birth

Main Source of Standard: Derived from the nearest equivalent Government Data Standards Catalogue standard ‘Person Gender at Registration’

Definition: This is a factual statement, as far as is known, about the phenotypic (biological) sex of the person at birth

Format: Characters

Field Length: 1

Codes and values:

Code Value Explanatory Notes

0 Not known

1 Male

2 Female

9 Not specified/Indeterminate Where it has not been possible to determine if the person is male or female at birth, e.g. intersex / hermaphrodite.

Related Data Items: Person Current Gender

Further information: A person’s sex has clinical implications, both in terms of the individual’s health and the health care provided to them. In the majority of cases, the phenotypic (biological) sex and genotypic sex are the same and the phenotypic sex is usually easily determined. In a small number of cases, accurate determination of genotype may be required.


Equivalent to Sex (Gender) in Melanoma dataset.



(version 1)

11

Location of Diagnosis {Cancer}

Definition: The patient's hospital of investigation in which the diagnosis of cancer was first made

Format: Characters

Field Length: 5

Further Information: This may also be a GP surgery code if a biopsy was taken by a GP. This will be the hospital/GP surgery where the sample was taken or the hospital at which the patient was managed when the diagnosis was made. Details of location codes for hospitals can be found in the "Definitions and Codes for the NHS in Scotland" manual produced by ISD Scotland. Location codes for hospitals are five character codes maintained by ISD Scotland and the General Register Office (Scotland). The first character denotes the health board, the next three are assigned and the fifth denotes the type of location (H=hospital) e.g. A111H=Crosshouse Hospital G107H=Glasgow Royal Infirmary X1010=Not applicable X9999=Not recorded If a patient was provisionally diagnosed at one hospital but transferred to another for confirmation of the diagnosis only e.g. biopsy, then returns to the original hospital, the first hospital should be recorded as the Location of diagnosis.


Equivalent to Institute/Hospital of Diagnosis in Melanoma dataset.


(version 1)

12

Health Record Identifier

Common Name(s): Case Reference Number, CRN, Hospital Number

Main Source of Standard: Scottish Executive Health Department

Definition: A Patient Health Record Identifier is a code (set of characters) used to uniquely identify a patient within a health register or a HEALTH RECORDS SYSTEM, e.g. PAS.

Format: Characters

Field Length: 14

Further Information: The CHI number should always be used to identify a patient if available. However, health record identifiers, such as hospital numbers in patient administration systems (PAS), may be used locally until universal implementation of CHI has been achieved.


Equivalent to Unit Number (Hospital Patient Identifier) in Melanoma dataset.


(version 1)

13

CHI Number

Main Source of Standard: Scottish Executive Health Department.

Definition: The Community Health Index (CHI) is a population register, which is used in Scotland for health care purposes. The CHI number uniquely identifies a person on the index.

Format: Characters

Field Length: 10


Further information: The Community Health Index (CHI) is a computer based population index whose main function at present is to support primary care services. CHI contains details of all Scottish residents registered with a General Practitioner and was originally envisaged and implemented as a population-based index to help assess the success of immunisation and screening programmes. It is therefore closely integrated with systems for child health, cervical cytology and breast screening call and recall…It is intended that this number, the Scottish equivalent of the new NHS number in England and Wales, should become the Unique Patient Identifier throughout the NHS in Scotland. From Designed to Care - Scottish Office The CHI number is a unique numeric identifier, allocated to each patient on first registration with the system. The CHI number is a 10-character code consisting of the 6-digit date of birth (DDMMYY), two digits, a 9th digit which is always even for females and odd for males and an arithmetical check digit. (ISD, Information Services, NHS National Services Scotland) The CHI number should always be used to identify a patient. However, Health record identifiers, such as hospital numbers in Patient Administration Systems (PAS), may be used locally, in conjunction with the CHI number or in the absence of the CHI number, to track patients and their records.

Although there may be no number when a patient presents for treatment, there must be an allocation at some point in the episode of care as CHI is mandatory on all clinical communications. Non-Scottish patients and other temporary residents can have a CHI number allocated if required but it is envisaged that future development may allow the identifying number used in other UK countries to be used in Scotland.


Equivalent to CHI Number in Melanoma dataset.


(version 1)

14

Registered GP Practice Code

Common Name(s): Registered GP Practice

Main Source of Standard: SMR Definitions and Codes

Definition: General Medical Practitioners provide general medical services to the population either in partnership with other GMPs or on a single-handed basis. The term GP practice covers both partnerships and single-handed practices. Each GP practice in Scotland is identified by a unique GP practice code. The practice code is a four-digit code plus a check digit with ranges of codes allocated to each Health Board. (Scottish Morbidity Record - NHS Information Services)

Format: Characters (right justified) Field Length: 6

Further Information: It should be noted that patients are no longer registered with an individual GP, but with a practice. In NHS Scotland, the practice code is a four-digit code plus a check digit with ranges of codes allocated to each Health Board. ISD maintains a GP Practice code reference file which contains up to date details of address, postcode, telephone number for each GP Practice in Scotland. In England and Wales, the field is 6 digits therefore to accommodate cross border patient flows, this should be taken into account.


Equivalent to GP Practice Code in Melanoma dataset.


(version 1)

15

HOSPITAL CLINICIANS AND REFERRAL DETAILS

Date of cancer referral

Main source of data standard: The National Cancer Datasets developed by the Cancer Networks supported by ISD from SEHD guidance issued 13 April 2005.

Definition : Date of cancer referral is the date on which a referral is made by a primary care or hospital clinician for symptoms that lead to a diagnosis of cancer.

Format: Store as 10 characters in the format CCYY-MM-DD. Display as DDMMCCYY.


Related data item: Source of cancer referral, Urgency of cancer referral.

Further information: This is the date on the referral letter (if there are a number of dates record the date the letter was typed) or fax message, or of the telephone call or e-mail and may be the same date as the date on which the referral is received or earlier. If there is not a referral correspondence, the date documented in the case notes should be recorded. If the patient is referred by another hospital clinician while being investigated for a condition unrelated to their cancer (incidental finding), the date the patient was referred for investigation of their cancer should be recorded. For patients where the cancer was detected at a review clinic for pre-cancerous conditions or an existing cancer, or at a cancer genetic clinic, the date the decision was made to refer for further investigation of the cancer should be recorded. For patients referred from screening the date the patient is first referred to a hospital clinician for investigation of their cancer should be recorded. This may take place at a screening centre or a hospital. If a patient is referred from primary care but is admitted as an emergency before the clinic date, record date of referral as the original referral date. If a patient has not been referred previously for investigation of the cancer record the date the patient presents to A&E or Acute Admissions, (self or GP referral).

If the exact date is not documented, record as 09/09/0909.

Date of referral may be after the date of diagnosis e.g. where the GP has excised the tumour for melanoma.


(version 1)

16

Date Referral Received

Definition: Date referral received is the date on which a healthcare service receives a referral.

Notes for Users: This may be the same as the date of referral or later. Also known as Referral Received Date. Definitions and Codes Manual, 6th Update, April 2002


(version 1)

17

Source of cancer referral

Main source of data standard: The National Cancer Datasets developed by the Cancer Networks supported by ISD.

Definition : This denotes the route by which the patient was referred for investigation of signs or symptoms that lead to a diagnosis of cancer.

Format: 2 Characters

Codes and values: Code Specialty

01 Primary care clinician (GP, Nurse practitioner)

02 Screening service

03 Incidental finding

04 Review clinic

05 Cancer genetic clinic

06 Self-referral to A&E

07 GP referral directly to hospital (A&E or other)

08 Previous GP referral but subsequently admitted to hospital (A & E or other) subsequently 09 Not recorded

11 Primary care clinician (Dental)

12 Referral from private healthcare

13 Other

Related data item: Date of cancer referral, Urgency of cancer referral.

Further information: Patients may be referred by a general or dental practitioner to a clinic if the patient presents with symptoms requiring further investigation which lead to a diagnosis of cancer. A general practitioner is a registered practitioner who provides general medical services to the community in partnership with other GPs or on a single-handed basis. Patients presenting at A&E or acute admissions are often referred by their general practitioner (and may already have an outstanding primary care referral for cancer) so should be recorded under (code 8). Patients without a previous GP referral should be coded as 6 (self referral) or 7 (GP referral).

After attending for routine screening in a Screening Programme a patient may be referred for further investigation, 2 (screening service).

Some patients may be attending or referred to hospital for investigation or treatment of a condition unrelated to their cancer and a tumour is diagnosed, 3 (incidental finding).

Patients may attend an outpatient cancer clinic as they are being followed up for benign disease or a previous cancer of the same site as diagnosed (4 review clinic) or because of a strong family history of cancer (5 genetic clinic).

13 (Other) includes following a domiciliary visit by a hospital clinician.

NOTE: Referrals from private health care are still excluded from waiting times

reporting.


(version 1)

18

Urgency of cancer referral

Main source of data standard: ISD Definitions and Codes Manual, 6th Update, April 2002 and SEHD guidance issued 13 April 2005.

Definition : This denotes the urgency of referral for investigation of cancer as assigned by the referring primary care clinician.


Codes and values:

Code Description

01 Urgent

02 Soon

03 Routine

09 Not recorded

10 Inapplicable

Related data item: Source of cancer referral, Date of cancer referral.

Further information: Outpatient referral category is the classification of an outpatient referral into urgent, soon and routine as perceived by the source of referral.

Urgent - for clinical reasons, a patient requires an appointment at the earliest possible opportunity.

This includes patients referred by a primary care clinician to where a risk based triage system is formally in place and the patient is subsequently categorised as high risk or urgent.

Soon - for clinical reasons, a patient requires an earlier appointment than he/she would receive if given the next available routine appointment.

Routine - a patient requires the next available routine appointment.

Emergency referrals should be classed as urgent. This includes self-referral to A & E or Acute Admissions. If a primary care clinician has not referred a patient then code as inapplicable. If a patient is referred from primary care but is admitted as an emergency before the clinic date, record urgency of referral as denoted by the referring primary care clinician at the time of the original referral.


(version 1)

19

Seen by GP Only {Squamous cell carcinoma}

Definition: This denotes whether the patient was seen and treated by the GP only.

Notes for Users:

Coding Details:

Code Value

00 No

01 Yes

99 Not known


(version 1)

20

Section 2: Hospital Clinicians and Specialties

Data Items in this Section Have NCDDP Equivalents but to

Align with the National Melanoma Data Set these have been

Presented in National Audit Format


(version 1)

21

Clinician in Charge {Squamous cell carcinoma}

Definition: This denotes the clinician in charge of the overall management of the patient.

Notes for Users: The clinician in charge of the patient may be one of the consultants as described by clinician 1-4 elsewhere.

Coding Details: The surname and forename of each clinician should be recorded to distinguish between consultants with common surnames. If there are two consultants with the same forename and surname, the specialty of consultant will be required. If the patient is managed by a clinician who is working as a locum, record only that the clinician is a locum consultant. Clinicians’ names should be stored in databases as General Medical Council (GMC) number. If the patient’s tumour is completely excised by a GP record as GP code ‘8888’. If a clinician’s name is not recorded code as '9999'.

Notes by Users:

Data item requires to be aligned with NCDDP in the future


(version 1)

22

Clinician 1-4

Definition: Clinicians are consultants who carry clinical responsibility for a patient’s healthcare during an episode.

Notes for Users: The data set allows for the full name of up to four hospital consultants to be recorded. Record, in chronological sequence, the first four consultants seeing the patient for their diagnosis and primary treatment. This also applies to those patients where diagnosis is an incidental finding. Clinician 1 should be the first contact for investigation with a secondary health care consultant that started the referral pathway leading to the diagnosis and subsequent treatment.

Coding Details: The surname and forename of each clinician should be recorded to distinguish between consultants with common surnames. If there are two consultants with the same forename and surname, the specialty of consultant will be required. If the patient is seen by a member of the consultant’s junior staff, record the name of the consultant in charge of the patient. If the patient is seen by a clinician who is working as a locum, record only that the clinician is a locum consultant. Clinicians’ names should be stored in databases as General Medical Council (GMC) number. If a clinician’s name is not recorded code enter '9999'. If the patient does not see clinician 2, 3 or 4 code as inapplicable (1010). If the clinician seeing a patient at a hospital clinic is a GP, or the clinician is described as a ‘trust practitioner’, record as GP, rather than the name of the GP.

Notes by Users:



(version 1)

23

Specialty of Clinician 1-4

Definition: The specialty of the clinician is the specialty in which he/she is formally recognised and contracted to work. A clinician may be formally recognised and contracted to work in more than one specialty; in these cases one specialty is recognised as the main one. If a consultant is recognised in more than one specialty, the patient episode should be recorded under the specialty that best reflects the care given for that patient’s problem or condition. The specialty designation of beds is not used to determine patient episode specialty.

Definitions and Codes Manual, 6th Update, April 2002

Notes for Users: The specialty of up to four clinicians can be recorded. The first specialty should relate to the first hospital clinician recorded in the clinician field, the second for the second clinician etc. If the clinician is a GP this also has a specialty code (see coding details).

If the clinician is a locum the specialty should still be recorded.

Coding Details:

Code Specialty

A1 General Medicine

A2 Cardiology

A3 Clinical Genetics

A5 Clin Pharm. & Therap.

A6 Communicable Diseases

A7 Dermatology

A8 Endocrin. & Diabetes

A9 Gastroenterology

AA Genito-Urinary Med

AB Geriatric Medicine

AC Homeopathy

AD Medical Oncology

AF Medical Paediatrics

AFA Community Child Health

AG Nephrology

AH Neurology

AK Occupational Health

AM Palliative Medicine

AN Public Health Medicine

AP Rehabilitation Med.

AQ Respiratory Medicine

AR Rheumatology

C1 General Surgery

C2 Accident & Emergency


(version 1)

24

Specialty codes continued Code Specialty

C3 Anaesthetics

C4 Cardiothoracic Surgery

C5 ENT Surgery

C6 Neurosurgery

C7 Ophthalmology

C8 Orthopaedic Surgery

C9 Plastic Surgery

CA Surgical Paediatrics

CB Urology

D1 Community Dentistry

D3 Oral Surgery

D4 Oral Medicine

D5 Orthodontics

D6 Restorative Dentistry

D7 Community Dental Health

D8 Paediatric Dentistry

E1 General Practice

F1 Obstetrics & Gynaecology

F1A Well Woman Service

F1B Family Planning Service

G1 General Psychiatry

G1A Community Psychiatry

G2 Child & Adolescent Psych

G3 Forensic Psychiatry

G4 Old Age Psychiatry

G5 Mental Handicap

G6 Psychotherapy

H1 Diagnostic Radiology

H1A Breast Screening Service

H2 Radiotherapy

H3 Nuclear Medicine

J1 Pathology

J2 Blood Transfusion

J3 Clinical Chemistry

J4 Haematology

J5 Immunology

J6 Microbiology

J7 Virology

99 Not recorded

Notes by Users:



(version 1)

25

Date of First Seeing Clinician 1-4

Definition: Date of first seeing clinician is the date on which a consultant (or one of his team) first sees a patient for investigation or management of cancer following referral from primary or secondary healthcare.

Notes for Users: Dates for up to four clinicians can be recorded. The first date should relate to the first clinician in the first specialty, the second for the second clinician etc.

Coding Details: The format should be DDMMCCYY. If the exact date is not documented, record as 09/09/0909. The patient may not see clinicians 2, 3 or 4. In this case record 10/10/1010 (inapplicable) where appropriate.

Notes by Users:


(version 1)

26

Section 3: Presentation Details


(version 1)

27

Duration of Lesion {Squamous cell carcinoma}

Definition: This denotes how long the lesion has been visible.

Notes for Users:

Record the length of time in weeks.


(version 1)

28

Laterality {Cancer}

Main Source of Standard: The National Cancer Datasets developed by the Cancer Networks supported by ISD and the Scottish Cancer Registry Guidlines, Fourth Edition, 2001.

Definition: The side or laterality (i.e. left or right) of the body in which the tumour is located.

Format: Characters

Field Length: 2

Codes and values: Code Value Explanatory Notes

01 Right

02 Left

03 Bilateral

04 Midline

96 Not applicable (non paired organs)

e.g. Non-paired organs

99 Not known Includes not recorded

Recording guidance: This item should be recorded for all paired organs and may be applicable for other tumours e.g. skin, tonsil.


Equivalent to Side (Tumour) in Melanoma dataset.


(version 1)

29

Site of Tumour

Definition : This denotes the anatomical site of origin of the primary tumour.

Notes for users: Codes used were as supplied by the Scottish Melanoma Group (SMG).

Coding Details:

Code Description

01 Face

11 Vermilion border of lip

02 Scalp

03 Neck

04 Ears

05 Trunk anterior

15 Trunk anterior above waist

25 Trunk anterior below waist

06 Trunk posterior

16 Trunk posterior above waist

26 Trunk posterior below waist

07 Arm

17 Arm above elbow

27 Arm below elbow

08 Leg

18 Leg above knee

28 Leg below knee

19 Dorsum of foot

29 Dorsum of hand

39 Palm

49 Sole

50 Mucosal

51 Oral Mucosal

52 Genital Mucosal

53 Anal Mucosal

59 Subungual hand

69 Subungual toe

98 Metastatic Disease only (No primary found)

99 Not recorded

Notes by Users


(version 1)

30

Clinical Largest Diameter {Squamous cell carcinoma}

Definition: This is the size of the tumour as determined by physical examination.

Notes for Users: The size should be measured in centimetres.

Coding Details: If no measurement has been recorded code as 9999 If the patient presents with disease where no identifiable primary lesion can be found, code as inapplicable 1010.

Notes by Users:


(version 1)

31

Date of Diagnosis {Squamous Cell Carcinoma}

Definition: The date of diagnosis is the date on which there was confirmation of the diagnosis of melanoma whether by histology or cytology.

Notes for Users: If multiple histological or cytological findings have been carried out, the date of the first procedure that confirmed a positive diagnosis of melanoma is taken. The date recorded is the date the procedure was performed, not the date the report was issued.

Coding Details: The date format should be DDMMCCYY. If the exact date is not documented, record as 09/09/0909.

Notes by Users:


(version 1)

32

Most Valid Basis of Diagnosis {Cancer}

Main Source of Standard: International Agency for Research on Cancer (IARC) and Scottish Cancer Registry Guidelines, Fourth Edition, 2001.

Definition: The best evidence in support of the diagnosis of cancer.

Format: Characters

Field Length: 2

Codes and Values:


01 Clinical only The diagnosis is based solely on clinical findings (history and/or physical examination). This is made before death but without the benefit of the following:

02 Clinical investigation The diagnosis is supported by investigations such as x-ray, CT scan, ultrasound etc.

03 Exploratory surgery/endoscopy/autopsy (without concurrent or previous histology)

The tumour has been visualised or palpated but there is no confirmatory microscopic evidence

04 Tumour specific markers (biochemical/immunological tests)

The diagnosis is supported by specific tests

05 Cytology The diagnosis is supported by cytology (the examination of cells whether from a primary or secondary site).

06 Histology of metastasis The diagnosis is based on the histology of a metastasis (secondary deposit), e.g. resulting from a lymph node biopsy

07 Histology of primary The diagnosis is based on the histology of the primary either resulting from a biopsy or from complete resection of the tumour.

08 Autopsy (with histology) The diagnosis is based on the findings at autopsy supported by concurrent or previous histology.

10 Death Certificate only The only information available to the registry is from a death certificate.

99 Not known

Further Information: The conclusion of a diagnosis of cancer may be based on one or several procedures; clinical findings or as a report on the death certificate. Histological confirmation is considered as the most valid basis of diagnosis. The methods of diagnosis are listed in essentially ascending order of validity, microscopic methods having greater validity than non-microscopic methods. NB: With the emergence of molecular markers etc., there are plans to review the definition of this variable in the context of updating the IARC monograph, Cancer Registration Principles and Methods.



(version 1)

33

Patient Immunosuppressed {Squamous cell carcinoma}

Definition: This denotes whether the patient’s immune response is suppressed.

Notes for Users:

Immunosuppression may be caused by antimetabolites or radiation or the administration of drugs to prevent rejection of grafts or organ transplants. It may also be caused by infection as in aquired immune deficiency syndrome (AIDS).

Coding Details:

Code Description Explanatory Notes

00 No

01 Yes

96 Not applicable

99 Not known Includes Not recorded

Notes by Users:


(version 1)

34

Previous Biopsy {Squamous cell carcinoma}

Definition: This denotes whether there has been a previous biopsy of the tumour.

Notes for Users:

-

Coding Details:


00 No

01 Yes

96 Not applicable


Notes by Users:


(version 1)

35

Section 4: Surgery


(version 1)

36

Surgery Performed 1-4 {Squamous Cell Carcinoma}

Definition: This denotes the type of surgery performed on the patient for primary diagnosis or treatment of Squamous cell carcinoma.

Notes for Users:

A patient may have up to four operations recorded covering diagnosis and treatment.

Fine needle aspiration (FNA) involves cytological examination of cells obtained by FNA .

Excision biopsy is the complete removal of the tumour at biopsy.

Incision/partial biopsy is where tissue is surgically removed for pathological examination. Both punch and shave biopsies should be recorded as ‘partial biopsy’.

Wide excision involves the complete removal of tumour with appropriate clearance.

Amputation is usually the removal of fingers or toes, or unusually a larger part of a limb.

Metastectomy involves the removal of distant skin, node and visceral metastases, or where the site of the primary is unknown, disseminated metastases.

Mohs micrographic surgery includes a specific sequence of surgery with immediate pathological examination of the removed tissue. The aim is remove all tumour while minimising removal of non involved tissues.

Curettage and cautery (electrosurgery) is a procedure in which a skin lesion is scraped off and heat applied to the skin surface.

Coding Details:

Code Description Sub-

Code

Sub-Value Explanatory Notes

01 FNA

02 Excision Biopsy

A No initial diagnostic surgery

B After diagnostic surgery

03 Partial Biopsy

A Incision Biopsy

B Punch and curettage Without cautery

C Shave Biopsy

04 Wide Excision

05 Amputation

06 Metastectomy

07 Curettage and cautery

08 Mohs micrographic surgery

09 Other (Specify)

10 Patient declined

96 Not applicable

99 Not known Includes not recorded

If no surgery was undertaken record as ‘not applicable’.

Notes by Users:


(version 1)

37

Date of Surgery {Cancer}

Definition: The date on which the first operation for cancer was performed.

Format: CCYY-MM-DD

Field Length: 10

Sub Data Items:

Verification level:

Code Value

Level 0 Actual

Level 1 Estimated

Level 2 Not known

Related Data Items: Cancer Surgery Information {Cancer}

Recording Guidance: This item may occur more than once throughout a patient’s record.


Equivalent to Date of Surgery Performed 1-4 in Melanoma dataset.



(version 1)

38

Location Code (Cancer surgery)

Common Name(s): Location, Location of Contact.

Main Source of Standard: Derived from SMR data standards.

Definition: This is the reference number of any building or set of buildings where events pertinent to NHS Scotland take place. Locations include hospitals, health centres, GP surgeries, clinics, NHS board offices, nursing homes, schools and patient/client's home.

Format: Characters

Field Length: 5

Related Data Items: Base of Service

Further Information: Each location has a location code, which is maintained jointly by ISD and General Register Office (Scotland).http://www.show.scot.nhs.uk/smrfiles/information.html – datafiles Location must be viewed as an address and not a code. If any new locations arise where NHS healthcare is delivered/administered, please ensure that the Reference Files Team at ISD is informed using form LOC-NEW (which can be downloaded from the website below) so that a new code may be issued as appropriate. http://www.show.scot.nhs.uk/smrfiles

Recording Guidance: Information about location should be electronically stored, managed and transferred using the relevant location code. IT systems should allow the recording and display of locations on the user interface as the relevant location name and associated address, etc.



http://www.show.scot.nhs.uk/smrfiles/information.html

http://www.show.scot.nhs.uk/smrfiles


(version 1)

39

Regional Node Dissection Performed {Squamous cell carcinoma}

Definition: This denotes whether or not surgical dissection was performed to the regional nodes.

Notes for Users: The regional lymph nodes are the first group of lymph nodes to receive lymphatic drainage from a primary tumour. The regional lymph nodes vary according to the site of the primary tumour as defined by the TNM classification.

Coding Details:


00 No

01 Yes

99 Not known Not recorded

Notes by Users:


(version 1)

40

Date of Regional Node Dissection {Squamous cell carcinoma}

Definition: The date dissection of the regional nodes was performed.

Format: CCYY-MM-DD

Field Length: 10

Sub Data Items:

Verification level:

Code Value

Level 0 Actual

Level 1 Estimated

Level 2 Not known

Related Data Items: Cancer Surgery Information {Cancer}




(version 1)

41

Section 5: Pathology


(version 1)

42

Histo/ Cytopathology Report Number

Definition: The reference number of the histo/ cytopathology specimen.

Format: Characters

Field length: 20


Related data items: Histo/ Cytopathology Investigation Report Date Date Specimen Taken

Recording guidance: This item may occur more than once throughout a patient’s record.



(version 1)

43

Location Code (Pathology)

Common Name(s): Location, Location of Contact.

Main Source of Standard: Derived from SMR data standards.

Definition: This is the reference number of any building or set of buildings where events pertinent to NHS Scotland take place. Locations include hospitals, health centres, GP surgeries, clinics, NHS board offices, nursing homes, schools and patient/client's home.

Format: Characters

Field Length: 5

Related Data Items: Base of Service

Further Information: Each location has a location code, which is maintained jointly by ISD and General Register Office (Scotland).http://www.show.scot.nhs.uk/smrfiles/information.html – datafiles Location must be viewed as an address and not a code. If any new locations arise where NHS healthcare is delivered/administered, please ensure that the Reference Files Team at ISD is informed using form LOC-NEW (which can be downloaded from the website below) so that a new code may be issued as appropriate. http://www.show.scot.nhs.uk/smrfiles

Recording Guidance: Information about location should be electronically stored, managed and transferred using the relevant location code. IT systems should allow the recording and display of locations on the user interface as the relevant location name and associated address, etc. Example s of codes are given below.

Code Institution

A111H CROSSHOUSE HOSPITAL

C418H ROYAL ALEXANDRA HOSPITAL

F704H VICTORIA HOSPITAL, KIRKCALDY

G107H GLASGOW ROYAL INFIRMARY

G405H SOUTHERN GENERAL HOSPITAL, GLASGOW

G412V* ROSS HALL HOSPITAL

G516H WESTERN INFIRMARY/GARTNAVEL GENERAL

H202H RAIGMORE HOSPITAL

L106H MONKLANDS HOSPITAL, AIRDRIE

L308H WISHAW GENERAL HOSPITAL

L302H HAIRMYRES HOSPITAL, EAST KILBRIDE

N101H ABERDEEN ROYAL INFIRMARY

S116H WESTERN GENERAL HOSPITAL, EDINBURGH

S124V* MURRAYFIELD HOSPITAL

S308H ST JOHN’S HOSPITAL

S314H ROYAL INFIRMARY, EDINBURGH

T101H NINEWELLS HOSPITAL


http://www.show.scot.nhs.uk/smrfiles/information.html

http://www.show.scot.nhs.uk/smrfiles


(version 1)

44

T202H PERTH ROYAL INFIRMARY

V201H STIRLING ROYAL INFIRMARY

Y104H DUMFRIES & GALLOWAY ROYAL INFIRMARY

X9999 NOT RECORDED

X1010 NOT APPLICABLE

Further information: * Private hospital.


(version 1)

45

Date Histo/ Cytopathological Specimen Taken

Definition: This is the date the histo/ cytopathogical specimen was taken.

Format: CCYY-MM-DD

Field Length: 10

Sub Data Items:

Verification Level:

Code Value

Level 0 Actual

Level 1 Estimated

Level 2 Not known

Related Data Items: Histo/ Cytopathology Investigation Report Date, Histo/ Cytopathology Report Number

Further Information: This could be a biopsy, cytology, or surgical excision specimen.

Recording Guidance: This item may occur more than once throughout a patient’s record





(version 1)

46

Histo/ Cytopathology Investigation Report Date

Definition: The date that the result of the investigation was formally reported and authorised by the pathology laboratory.

Format: CCYY-MM-DD

Field Length: 10

Sub Data Items:

Code Value

Level 0 Actual

Level 1 Estimated

Level 2 Not known

Related Data Items: Histo/ Cytopathology Report Number, Date Histo/ Cytopathology Specimen Taken






(version 1)

47

Number of lymph Nodes Examined -

Definition: This is the number of lymph nodes found in the specimen removed from the patient at the time of surgery and sent to pathology for analysis.

Notes for Users: The examination of the nodes is associated with invasive cancer only. If sentinel node biopsy has been performed these are recorded separately.

Coding Details:

Code Description

9999 Not recorded

1010 Inapplicable

If the definitive diagnosis is made clinically or by imaging techniques only (ie no histology is available), code as 1010 (inapplicable).

Notes by Users:


(version 1)

48

Number of Non-Sentinel Nodes Involved

Definition: This is the number of non-sentinel lymph nodes found in the specimen removed from the patient at the time of surgery and sent to pathology for analysis that are infiltrated with tumour cells.

Notes for Users: Examination of the nodes is associated with invasive cancer only. If sentinel node biopsy has been performed these are recorded separately.

Coding Details:

Code Description

1010 Inapplicable

7777 Nodes positive but number unknown

9999 Not recorded

If the definitive diagnosis is made clinically or by imaging techniques only (i.e. no histology is available), code as 1010 (inapplicable).

Notes by Users:


(version 1)

49

Lymphatic/Blood Vessel Invasion

Definition: This denotes the presence or absence of lymphatic and/or blood vessel invasion.

Notes for Users: This will be confirmed by microscopic examination and the final result can be found on the pathology report relating to the specimen from the final definitive (or only) surgery performed.

Coding Details:

Code Description Explanatory Notes 00

No

01 Yes

02 Uncertain

96 Not applicable


If the definitive diagnosis is made clinically or by imaging techniques only (i.e. no histology is available), code as 96 (not applicable).

Notes by Users:


(version 1)

50

Perineural Invasion

Definition: This denotes the presence or absence of perineural invasion.


Coding Details:


No

01 Yes

02 Uncertain

96 Not applicable


If the definitive diagnosis is made clinically or by imaging techniques only (i.e. no histology is available), code as 96 (not applicable).

Notes by Users:


(version 1)

51

Distance from Peripheral Margin

Definition: This denotes the distance of the tumour from the peripheral margin.


Coding Details:

The distance is measured in millimetres.


< 1mm

02 > 1mm

03 Involved

04 Clear

96 Not applicable


Notes by Users:


(version 1)

52

Distance from Deep Margin

Definition: This denotes the distance of the tumour from the deep margin.


Coding Details:

The distance is measured in millimetres.


01

< 1mm

02 > 1mm

03 Involved

04 Clear

96 Not applicable


Notes by Users:


(version 1)

53

Tumour Type (Morphology of Tumour) {Cancer}

Main Source of Standard: The World Health Organisation (WHO) and the Cancer Registration New Data definitions for Socrates (August 1999 Version 8.0).

Definition: The morphology of the tumour according to the International Classification of Diseases for Oncology (ICD-O(3)).

Format: Characters ICD-O(3)

Field Length: 5

Further Information: The morphology is coded according to the International Classification of Disease for Oncology, Third Edition, World Health Organisation classification ICD-O(3). The first four digits relate to the morphology code, the last 5

th digit relates to the behaviour code i.e.

5th Digit Code Value

0 Benign

1 Uncertain whether benign or malignant Borderline malignancy Low malignant potential Uncertain malignant potential

2 In-situ; Intraepithelial; Non-infiltrating; Non-invasive

3 Malignant, primary site

6 Malignant, secondary (metastatic) site

9 Malignant, uncertain whether primary or metastatic site

Recording Guidance: IT systems should allow for the recording of multiple tumour types.



(version 1)

54

Histological Sub-type

Definition: This denotes the special variant of the lesion.

Notes for Users:

Coding Details:

Code Description 01 Classic/No special type

02 Spindle Cell

03 Acantholytic (pseudoglandular/adenoid)

04 Verrucous

05 Desmoplastic

06 Keratoacanthoma

07 Clear Cell

08 Papillary

99 Not known


(version 1)

55

Degree of Differentiation {Squamous cell carcinoma}

Definition: The extent to which different characteristics of cells have developed.

Format: 2 characters

Codes and values:

Code Value Explanatory Notes 01 Well

02 Moderate

03 Poor

04 Undifferentiated

96 Not applicable No invasive diagnostic procedures.


Recording guidance: If there are multiple tumours record the details related to the most advanced tumour (i.e. the one with the poorest prognostic stage). If report states between two grades e.g. poor to moderate, record poorest grade.


(version 1)

56

TNM Tumour Classification (Pathological) {Squamous cell

carcinoma}

Main source of standard: TNM classification (TNM Classification of Malignant Tumours, Sixth Edition, 2002).

Definition: This is the size of the tumour according to the official TNM classification (TNM Classification of Malignant Tumours, Sixth Edition, 2002) following resection of the primary cancer.


Codes and values:


00 TNM Classification pT0 No evidence of primary tumour

01 TNM Classification pT1 Tumour 2 cm

02 TNM Classification pT2 Tumour > 2 cm – 5 cm

03 TNM Classification pT3 Tumour > 5 cm

04 TNM Classification pT4 Tumour invades deep extradermal structures (cartilage, skeletal muscle, bone).

05 TNM Classification pTX Primary tumour cannot be assessed

96 T Classification Not applicable

99 T Classification Not recorded/Not known

Related data items: TNM Nodal Classification (Pathological) {Squamous cell carcinoma}; TNM Metastases Classification (Pathological) {Squamous cell carcinoma}, Date of Pathological TNM Staging (Cancer}.

Further information: The TNM system is a classification of malignant tumours used by oncologists to aid in the planning of treatment, give an indication of prognosis, assess the results of treatment, exchange information between treatment centres and contribute to the continuing investigation of human cancer. Clinical TNM is derived from all the information prior to surgical treatment. Pathological TNM classification or pTNM is derived from all of that plus the examination of the pathological specimen. The TNM system is based on the assessment of three components (tumour, node and metastases) and the addition of numbers after the letter components to indicate the extent of the malignant disease.

Recording guidance: IT systems should allow for the recording of more than one TNM Tumour Classification (Pathological) {Squamous cell carcinoma}.


(version 1)

57

TNM Nodal Classification (Pathological) {Squamous cell

carcinoma}

Common name: Pathological TNM Nodal Classification {Squamous cell carcinoma}


Definition: The size and position of nodes detected by physical examination and imaging techniques (not pathological), and is coded according to the official TNM Classification (TNM Classification of Malignant Tumours, Sixth Edition, 2002).


Codes and values:


00 TNM Classification pN0 * No regional lymph node metastasis.

01 TNM Classification pN1 Regional lymph node metastasis.

02 TNM Classification pNX Regional lymph nodes cannot be assessed

96 N Classification Not applicable

99 N Classification Not recorded/Not known

Related data items: TNM Tumour Classification (Pathological) {Squamous cell carcinoma}, TNM Metastases Classification (Pathological) {Squamous cell carcinoma}, Date of Pathological TNM Staging {Cancer}

Further information: The TNM system is a classification of malignant tumours used by oncologists to aid in the planning of treatment, give an indication of prognosis, assess the results of treatment, exchange information between treatment centres and contribute to the continuing investigation of human cancer. Clinical TNM is derived from all the information prior to surgical treatment. (This should not be confused with pathological TNM classification, or pTNM, which combines all clinical staging information plus findings from examination of the pathological specimen). The TNM system is based on the assessment of three components (tumour, node and metastases) and the addition of numbers after the letter components to indicate the extent of the malignant disease.

* Histological examination of a regional lymphadenectomy specimen will ordinarily include 6

or more lymph nodes. If the lymph nodes are negative but the number ordinarily examined is not met, classify as pN0.

Recording guidance: IT systems should allow for the recording of more than one TNM Nodal Classification (Pathological) {Squamous cell carcinoma}.


(version 1)

58

TNM Metastases Classification (Pathological) {Squamous cell

carcinoma}

Common name: Pathological TNM Metastases Classification {Squamous cell carcinoma}


Definition: The extent of the spread of the disease to other than regional lymph nodes determined by clinical, imaging and biochemical methods (not pathological), and is coded according to the official TNM Classification (TNM Classification of Malignant Tumours, Sixth Edition, 2002).


Codes and values:

Code Value Explanatory notes

00 TNM Classification M0 No distant metastasis.

01 TNM Classification M1 Distant metastases

02 TNM Classification MX Not assessed

96 M Classification Not applicable

99 M Classification Not recorded/Not known

Related data items: TNM Tumour Classification (Pathological) {Squamous cell carcinoma}, TNM Nodal Classification (Pathological) {Squamous cell carcinoma}, Date of Pathological TNM Staging {Cancer}

Further information: The TNM system is a classification of malignant tumours used by oncologists to aid in the planning of treatment, give an indication of prognosis, assess the results of treatment, exchange information between treatment centres and contribute to the continuing investigation of human cancer. Clinical TNM is derived from all the information prior to surgical treatment. (This should not be confused with pathological TNM classification, or pTNM, which combines all clinical staging information plus findings from examination of the pathological specimen). The TNM system is based on the assessment of three components (tumour, node and metastases) and the addition of numbers after the letter components to indicate the extent of the malignant disease.

Recording guidance: IT systems should allow for the recording of more than one TNM Metastases Classification (Pathological) {Squamous cell carcinoma}


(version 1)

59

Depth of Tumour {Squamous cell carcinoma}

Definition:

This denotes the depth of the tumour in mm.

Notes for Users:

The depth of the tumour will be described in the pathology report and should be recorded in mm.


(version 1)

60

Length of Tumour {Squamous cell carcinoma}

Definition:

This denotes the length of the tumour in mm.

Notes for Users:

The length of the tumour will be described in the pathology report and should be recorded in mm.


(version 1)

61

Breadth of Tumour {Squamous cell carcinoma}

Definition:

This denotes the breadth of the tumour in mm.

Notes for Users:

The breadth of the tumour will be described in the pathology report and should be recorded in mm.


(version 1)

62

Level of Invasion {Squamous cell carcinoma}

Definition:

This denotes the spread of disease at the time of diagnosis of cancer.

Notes for Users:


01 Limited to the epidermis

02 Into the underlying papillary dermis

03 To the junction of the papillary and reticular dermis

04 Into the reticular dermis

05 Into the subcutaneous fat

96 Not applicable No invasive diagnostic procedures.



(version 1)

63

Date of Further Referral (Cancer)

Definition: This denotes the date that the patient was referred to the next responsible clinician as described elsewhere in clinician 1-4.

Format: CCYY-MM-DD

Field Length: 10

Sub Data Items:

Verification level:

Code Value

Level 0 Actual

Level 1 Estimated

Level 2 Not known

Related Data Items: Location of Further Referral

Further Information: The date of the referral letter should be recorded. If there is no referral letter the date documented in the case notes is recorded.

Recording Guidance: This item may occur more than once throughout a patient’s record. The patient may not be referred to clinicians 2, 3 or 4.


(version 1)

64

Location of further referral (cancer)

Definition: This denotes the hospital to which the patient was re-referred after initial diagnosis and surgery.

Format: 5 characters. (See location (Cancer Surgery), Page 48).


Further information: Details of location codes for hospitals can be found in the "Definitions & Codes for the NHS in Scotland" manual produced by ISD Scotland. Location codes for hospitals are five character codes maintained by ISD Scotland and the General Register Office (Scotland). The first character denotes the health board, the next three are assigned and the fifth denotes the type of location (H=hospital) e.g. A111H=Crosshouse Hospital G107H=Glasgow Royal Infirmary X1010=Not applicable X9999=Not recorded


(version 1)

65

Section 6 : Waiting Times Data Items


(version 1)

66

Type of first cancer treatment

Common name: Mode of first treatment.

Main source of data standard: The National Cancer Datasets developed by the Cancer Networks supported by ISD.

Definition: This denotes the first specific treatment modality administered to a patient.


Codes and values:

Code Description 01 Surgery

02 Radiotherapy

03 Chemotherapy

04 Synchronous Chemoradiotherapy

05 Endoscopic

06 Hormone therapy

07 No active treatment (Supportive care)

08 Patient refused all therapies

09 Not recorded

11 Other therapy

12 No active treatment (Watchful waiting)

14 Patient died before treatment

Related data item: Date of first cancer treatment

Further information: This field is included in the data standards to enable the accurate recording of waiting times. For any particular modality it is the first treatment and not specifically the definitive treatment i.e. this does not include purely diagnostic biopsies such as incisional biopsies, needle biopsies or core biopsies. Some biopsies, such as excisional biopsies and cone biopsies may be included as these may have some therapeutic benefits i.e. the removal of the tumour. Record patients as having ‘no active treatment’ if a decision was taken not to give the patient treatment as part of their primary therapy (some patients that have ‘no active treatment’ may subsequently have treatment when symptoms develop but this is not primary therapy). No active treatment includes watchful waiting and supportive care but not palliative chemotherapy and/or radiotherapy. Radiotherapy includes teletherapy (external beam radiotherapy) and brachytherapy. Endoscopic treatment includes photodynamic therapy, transurethral resection (TUR), laparoscopic treatment, endomucosal resection (EMR) and insertion of stents. Dilatations

without other treatment is not considered as active treatment. Biological therapies such as Interferon, Interlukin 2, BCG vaccine etc. should be recorded under other therapy.

Draft standard under discussion with the National Clinical Dataset Development

Programme (NCDDP)


(version 1)

67

Date of first cancer treatment

Main source of data standard: The National Cancer Datasets developed by the Cancer Networks supported by ISD

Definition: This denotes the date the type of first cancer treatment was given to the patient.

Format: Store as 10 characters in the format CCYY-MM-DD. Display as DDMMCCYY.


Related data item: Type of first cancer treatment

Further information: This field should be recorded for all patients including those with ‘no active treatment’ (see below). If type of first cancer treatment is ‘no active treatment’, the date recorded should be the first date the decision was taken not to give the patient treatment as part of their primary therapy. The aim of this date is to distinguish between patients who have initially had no treatment but receive some therapy when symptoms develop.

The date recorded should be that of the first type of cancer treatment.

If the exact date is not documented, record as 09/09/0909.

If the patient died before treatment or the patient refused treatment, record as 10/10/1010.


Programme (NCDDP)


(version 1)

68

Reason(s) for delays in starting first cancer treatment

Main source of data standard: The National Cancer Datasets developed by the Cancer Networks supported by ISD

Definition: This denotes reason for delay in the investigation, diagnosis and treatment of patients with cancer attributable to the patient and/or the system.


Codes and values:

Code Category of Delay Description of type of events

01 Patient induced non-clinical delay

Patient chooses to delay treatment pathway due to personal engagements/activities/patient did not attend (DNA).

02 Co-morbidities A morbidity that necessitates delay of treatment until recovery.

03 Routine staging or further investigation

Delay in staging tests necessary prior to treatment or when further testing and investigations are necessary to clarify diagnosis prior to treatment.

04 Referred for treatment outwith hospital of diagnosis

Patient is referred for treatment outwith hospital of diagnosis.

05 Lack of resources (including theatre time and available staff)

Delay due to resources not being adequate/available, including theatre time, staff on leave/sick.

06 Reconstruction Delay due to patients waiting for reconstructive surgery.

08 Other, please specify Other, please specify.

09 Not documented Not documented/Not known.

10 Inapplicable Patient treated within 62 days of referral

Further information: Treatment is considered as delayed when the patient is not treated within 62 days of referral as stated in Cancer in Scotland: Action for Change. It is only necessary to record delays when the target is known to be exceeded or obvious delays, eg patient would have started treatment earlier if they had not co-morbid disease, radiotherapy treatment machine broken down, patient attends wedding etc, have occurred at different stages of the journey. If multiple reasons for delays exist the reason recorded should be the one that contributed most to the overall delay. If it is not possible to identify which of the multiple reasons

contributed most to the delay, record the first delay that occurred.


Programme (NCDDP)


(version 1)

69

Section 7: Metastases and Death Details


(version 1)

70

Site of Metastases at Presentation {Squamous cell carcinoma}

Definition: This denotes the extent of spread of disease at the time of initial presentation with cancer.

Notes for Users: The site recorded should be as detected by the diagnosing clinician. This will normally be the hospital clinician but in situations where the GP has removed the tumour findings by the GP should be recorded.

Coding Details:

Code Description Explanatory Notes 01 Local – within 5cm of the primary tumour

02 Local - > 5cm from the primary tumour

03 Not possible to assess

96 Not applicable


Notes by Users:


(version 1)

71

Local Nodes at Presentation {Squamous cell carcinoma}

Definition: This denotes whether the local nodes were affected at the time of initial presentation with cancer.

Notes for Users: The site recorded should be as detected by the diagnosing clinician. This will normally be the hospital clinician but in situations where the GP has removed the tumour findings by the GP should be recorded.

Coding Details:

Code Description Explanatory Notes 01 Local – Clinically positive no histology

02 Local – Histologically positive


96 Not applicable


Notes by Users:


(version 1)

72

Disseminated Disease at Presentation {Squamous cell carcinoma}

Definition: This denotes whether disseminated disease was first identified in sites other than those detailed for site of metastases described elsewhere at the time of initial presentation with cancer.

Notes for Users: Disseminated disease is where the tumour is widely distributed in an organ or in the whole body separate from its site of origin. The site recorded should be as detected by the diagnosing clinician. This will normally be the hospital clinician but in situations where the GP has removed the tumour findings by the GP should be recorded.

Coding Details:

Code Description Explanatory Notes 01 Nodal – other than local nodes

02 Skin

03 Visceral

04 Brain


96 Not applicable


Notes by Users:


(version 1)

73

Person Death Date

Main Source of Standard: Government Data Standards Catalogue.

Definition: The date on which a person died or is officially deemed to have died, as recorded on the Death Certificate.

Format: Characters (CCYY-MM-DD)

Field Length: 10

Sub Data Items:

Code Value

Level 0 Not Verified / Interim Death certificate.

Level 1

One of the following: Notification from Hospital. Police Statement.

Level 2

One of the following: Documented Coroners Verdict. Presumption of death by a court of Law in England, Scotland or Wales.

Level 3

One of the following: Death Certificate BD8. Notification from General Registrars Office (system or clerical). Certificate of Registry showing given names and family name. GRO copy. Notification of death issued by Forces Department of the Ministry of Defence (MOD). Notification of death issued by the Registrar General of the Shipping and Seamen (Mercantile Marine).

Further Information: Government Data Standards Catalogue The Government Data Catalogue Standards recommend use of verification of date of death. Interim Death Certificates. There is a distinction between an interim death certificate and a death certificate showing the cause of death. The Registrars Office confirmed that all death certificates show a cause of death except where a case is referred to the Coroner for the cause of death to be determined. In these cases, an interim death certificate is issued. An interim death certificate is issued as a courtesy to the relatives/ friends of the deceased. It has no legal standing and is not deemed as verification of a cause/ date of death. Recording Guidance Interim Death Certificates should be identified using verification level '0'. If Death Verification Type is level 1, 2 or 3, then the Person Death Date cannot be amended.

This is an approved NCDDP data standard. Equivalent to Date of Death in Melanoma dataset



(version 1)

74

Underlying Cause of Death

Common Name(s): Cause of Death

Main Source of Standard: General Register Office for Scotland.

Definition: The underlying cause of death as recorded by GRO(S) in Part I of the death certificate.

Format: ICD10 code, ann.nnaann.nna

Field Length: 12

Further Information: Main Source of Standard:General Register Office for Scotland This refers only to the underlying cause of death, which is the condition recorded in the lowest completed line of Part I of the death certificate. In cases where a post mortem examination has been performed, the underlying cause of death recorded by the pathologist should replace any preceding entry. In cases where the Procurator Fiscal has been involved, the final underlying cause of death recorded by them should supersede any previous entry. The mode of dying, such as cardiac arrest or asphyxia, should not be recorded here. Other significant conditions contributing to the death but not related to the disease or condition causing it, as recorded in Part II of the death certificate, should not be recorded here.

This is an approved NCDDP data standard. Equivalent to Primary Cause of Death in Melanoma dataset



(version 1)

75

Appendix 1 - Squamous Cell Neoplasms

Tumour

Type

Description

8050/3 PAPILLARY CARCINOMA NOS

8051/3 VERRUCOUS CARCINOMA NOS, Verrucous squamous cell carcinoma, Verrucous epidermoid carcinoma

8052/3 PAPILLARY SQUAMOUS CELL CARCINOMA, Papillary epidermoid carcinoma

8070/3 SQUAMOUS CELL CARCINOMA NOS, Epidermoid carcinoma, NOS, Squamous carcinoma, Squamous cell epithelioma

8071/3 SQUAMOUS CELL CARCINOMA, KERATINIZING NOS, Squamous cell carcinoma, large cell, keratinizing, Epidermoid carcinoma, keratinizing

8072/3 SQUAMOUS CELL CARCINOMA, LARGE CELL, NONKERATINZING, Squamous cell carcinoma, nonkeratinizing, NOS, Epidermoid carcinoma, large cell, nonkeratinizing

8073/3 SQUAMOUS CELL CARCINOMA, SMALL CELL, NONKERATINZING, Epidermoid carcinoma, small cell, nonkeratinizing

8074/3 SQUAMOUS CELL CARCINOMA, SPINDLE CELL, Epidermoid carcinoma, spindle cell; Squamous cell carcinoma, sarcomatoid

8075/3 ADENOID SQUAMOUS CELL CARCINOMA, Pseudoglandular squamous cell carcinoma; Squamous cell carcinoma, acantholytic

8076/3 SQUAMOUS CELL CARCINOMA, MICROINVASIVE

8078/3* SQUAMOUS CELL CARCINOMA WITH HORN FORMATION

8082/3 LYMPHOEPITHELIAL CARCINOMA, Lymphoepithelioma, Lymphoepithelioma-like carcinoma, Schminke tumour

8083/3* BASALOID SQUAMOUS CELL CARCINOMA

8084/3* SQUAMOUS CELL CARCINOMA, CLEAR CELL TYPE

* ICD-O(3) code

squamous cell carcinoma - isd scotland€¦ · the definitions for squamous cell carcinoma are...

Documents