Data Definitions for the National Minimum Core Dataset to Support the Introduction of

Transcription

1 Head and Neck Cancer Data Definitions for the National Minimum Core Dataset to Support the Introduction of Head and Neck Cancer Quality Performance Indicators Definitions developed by ISD Scotland in Collaboration with the Head and Neck Quality Performance Indicator Development Group Version 1.8: November 2015 To be used in conjunction with: 1. Head and Neck Cancer Quality Performance Indicators 2. Head and Neck QPI Dataset Validations (latest published version) 3. Head and Neck Measurability of QPI (latest published version)

2 DOCUMENT CONTROL SHEET Key Information Title Date Published/Issued November 2015 Date Effective From 1 St April 2014 Version/Issue Number V1.8 Head and Neck Cancer Data Definitions for Minimum Core Dataset for Quality Performance Indicators (QPIs) Document Type Document Status Standard Audience Cross References Author Guidance Final NHS staff involved in implementing and recording Head and Neck Cancer Quality Performance Indicators Head and Neck Cancer Quality Performance Indicators Head and Neck Cancer Measurability of Quality Performance Indicators Information Services Division of NHS National Services Scotland Version Date Summary of Changes Name Changes Marked /07/2014 Amendment to Site of Origin of Primary Tumour (SITE) values Brian Murray, Charlotte See page iii New data item added Anthony, ISD Changes to be applied for patients diagnosed from 1 st April /09/2014 Amend Definitive Operative Procedure Jane See page iii Garrett /10/2014 Change in version number due to Jane See page iii validation changes Garrett /2014 Changes agreed outwith review to Jane See page iii support data collection /2015 Changes agreed after QA of validation documents Garrett Charlotte Anthony See page iii /2015 Changes agreed outwith review to support data collection Charlotte Anthony See page iii /2015 Changes agreed outwith review to support data collection Charlotte Anthony See page iii /2015 Changes agreed outwith review to support data collection Charlotte Anthony See page iii

3 CONTENTS PREFACE... i NOTES FOR IMPLEMENTATION OF CHANGES... ii CONVENTIONS... ii REVISIONS TO DATASET:... iii CRITERIA FOR INCLUSION OF PATIENTS IN AUDIT... vi Section 1: Demographic Items... 1 Person Family Name (at Diagnosis)... 2 Person Given Name... 3 Patient Postcode (at Diagnosis)... 4 Date of Birth... 5 Person Sex at Birth... 6 CHI Number... 7 Section 2: Pre-treatment Imaging & Staging Investigations... 8 Location of Diagnosis {Cancer}... 9 Date of Diagnosis {Cancer} Site of Origin of Primary Tumour {Cancer} Date of Histological/Cytological Diagnosis {Cancer} Imaging Completed (Pre-treatment) Date of Imaging Completed (Pre-treatment) Date Discussed by Care Team (MDT) Smoking Smoking Cessation Date Referred for Smoking Cessation Date of Oral Assessment (Pre-operative) Nutritional Screening Date of Nutritional Screening Specialist Speech and Language Therapist Access Date of Specialist Speech and Language Therapist Access TNM Tumour Classification (Clinical) {Head and Neck Cancer} TNM Nodal Classification (Clinical) {Head and Neck Cancer} TNM Metastases Classification (Clinical) {Head and Neck Cancer} WHO/ ECOG Performance Status Type of First Cancer Treatment Date of First Cancer Treatment Date of Definitive Treatment {Head and Neck Cancer} Section 3: Surgery Location Code {Cancer Surgery} Consultant in Charge of Surgery Date of Definitive Surgery Intent of Surgery Definitive Operative Procedure 1-9 {Head and Neck Cancer} Section 4: Pathological Details Morphology of Tumour Surgical Margins Extracapsular Spread Section 5: Oncology Location Code 1-2 {Oncology Treatment} Date Treatment Started (Radiotherapy) {Head and Neck Cancer} (1-2) Date Treatment Completed (Radiotherapy) {Head and Neck Cancer} (1-2) Radiotherapy Course Type {Head and Neck Cancer} (1-2) Intensity-Modulated Radiation Therapy (IMRT) Date Treatment Started Systemic Anti-Cancer Therapy (SACT) {Cancer} Date Treatment Completed Systemic Anti-Cancer Therapy (SACT) {Cancer} Type of Systemic Anti-Cancer Therapy (SACT) 1-2 {Head and Neck Cancer} Section 6: Clinical Trial Entry Patient Entered into Clinical Trial {Cancer} Section 7: Death Details Date of Death... 66

4 PREFACE Following the publication of Better Cancer Care: An Action Plan in October 2008, the Scottish Government established the Scottish Cancer Taskforce to oversee its implementation. The NHS Scotland Healthcare Quality Strategy in 2010 expands on this by articulating quality ambitions. A quality measurement framework has been developed setting out measures and targets which will be used to monitor, challenge, manage and report progress. Part of this strategy is the development of quality performance indicators (QPIs) to drive quality improvement in cancer care throughout NHS Scotland. As high quality data are required to enable comparisons over time and between regions, it is important that national data definitions are used to facilitate consistent data collection. National data definitions already in use have been used as much as possible to allow electronic data capture, thereby minimising duplication of data collection. Where national data definitions do not already exist, definitions used in other systems have been incorporated. To ensure that findings are comparable across Scotland, the national dataset and data definitions in conjunction with the final quality performance indicators were agreed through public engagement and are now ready for implementation for patients diagnosed from 1 st April i

5 NOTES FOR IMPLEMENTATION OF CHANGES The following changes should be implemented for all patients who are diagnosed with Head and Neck cancer on or after 1 st April 2014, who are eligible for inclusion in the Head and Neck cancer audit. Changes to definitions fall into the following categories: to address problems with ongoing audit and standardise data definitions, where feasible, between different cancer sites to address problems with existing definitions to allow Quality Performance Indicators to be measured and reported against If you have difficulties in using individual definitions within this document please contact General Enquiries on the Collection of the Minimum Core Data Set If you have any comments on the attached data definitions ISD would welcome your feedback. Please contact: NSS.ISDCANCERAUDIT@NHS.NET CONVENTIONS The layout for each item is standard as shown below where it is applicable: Common Name(s): Main Source of Data Item Standard: Definition: Field Name: Field Type: Field Length: Notes for Users: Codes and Values: Related Data Item(s): In addition the following two conventions have been used in the document: {curly brackets} - definition relates to one specific named data set 'described elsewhere' - indicates there is a definition for the named item within this document ii

6 REVISIONS TO DATASET OUTWITH REVIEW NOVEMBER 2015 Definitive Operative Procedure 1-9 {Head and Neck Cancer} (Query 1059)- The following code and value added Description OPCS Endoscopic Destruction of Lesion of Larynx E35.3 REVISIONS TO DATASET OUTWITH REVIEW August 2015 Morphology of Tumour The following codes and values added Code Description 8032/3 Spindle Cell Carcinoma 8720/3 Malignant Melanoma, NOS REVISIONS TO DATASET OUTWITH REVIEW June 2015 Location of Diagnosis {Cancer} Removed X1010 Not applicable REVISIONS TO DATASET: The following changes have been made to facilitate the recording of data. Changes to take effect for patients diagnosed from 01/04/2014. QA of Validations Person Given Name fieldname changed from PATFNAME to PATSFNAME Person Sex at Birth code numbering changed from 1, 2, 9 to 01, 02, 09 Site of Origin of Primary Tumour {Cancer} Field Type changed from Characters ICD-10 to Characters. Code changed from C32.3A(2) to C32.3A2. Field length changed from 9 to 7 TNM Metastases Classification (Clinical) {Head and Neck Cancer} Nasopharynx table added Nasopharynx Code Value Explanatory Notes MX Regional metastasis cannot be assessed M0 No distant metastasis M1 Distant metastasis 96 Not applicable 99 Not recorded Definitive Operative Procedure 1-9 {Head and Neck Cancer} added the codes listed below: F38.8 Extirpation of lesion of other part of mouth other specified F10.4 Extraction of multiple teeth NEC E02.8 Plastic operations on nose - Other specified iii

7 E49.1 Diagnostic fibreoptic endoscopic examination of lower respiratory tract and biopsy of lesion of lower respiratory tract F23.8 Extirpation of lesion of tongue F26.8 Other operations on tongue - Other specified T85.9 Blocked dissection of lymph nodes - unspecified V19.8 Other operations on mandible - Other specified Z94.1 Bilateral Z94.4 Unilateral Morphology of Tumour added the following code: 8746/3 - Mucosal lentiginous melanoma Database specification TNM Tumour Classification (Clinical) {Head and Neck Cancer} Fieldname changed from CT to ct TNM Nodal Classification (Clinical) {Head and Neck Cancer} Fieldname changed from CN to cn TNM Metastases Classification (Clinical) {Head and Neck Cancer} Fieldname changed from CM to cm Definitive Operative Procedures 1-9 {Head and Neck Cancer} Field Type changed from Integer to Characters REVISIONS TO DATASET OUT-WITH REVIEW (November 2014) Definitive Operative Procedure 1-9 {Head and Neck Cancer} add S Distant Myocultaneous to Head or Neck NEC and S36.1 Full Thickness Autograph to Head or Neck Morphology of Tumour add 9290/3 Ameloblastic odontosarcoma (Ameloblastic fibrodentinosarcoma, Ameloblastic fibro-odontosarcoma), 9310/3 Ameloblastoma, malignant (Adamantinoma, malignant), 9330/3 Ameloblastic fibrosarcoma (Ameloblastic sarcoma, Odontogenic fibrosarcoma), 9342/3 Odonteogenic carcinosarcoma REVISIONS TO DATASET OUT-WITH REVIEW (November 2014) Change in version number due to validation changes REVISIONS TO DATASET OUT-WITH REVIEW (September 2014) Dataset: Definitive Operative Procedure 1-9 {Head and Neck Cancer} i. Additional field names added OPCODE6-OPCODE9 ii. Amendment to Notes for Users iii. Diagnostic Procedure codes deleted iv. Amendment of codes for Creation of pharyngostome from code E28.1 to E23.8 Y16.1; Reconstruction mouth- with primary closure code will change from code F39.1 to F39.8 and Laser excision lesion hypopharynx and Laser excision oropharynx are combined with code E24.2 Y08.2 Database Specification: iv

8 Definitive Operative Procedure 1-9 {Head and Neck Cancer} Additional field names added OPCODE6-OPCODE9 Revisions (07/2014): Site of Origin of Primary Tumour (SITE) supplemental notes to users added to indicate which ICD- 10 subcategories do not map to a specific TNM stage. Enhancement to code descriptions and addition of Bone tables to TNM Tumour (ct), Nodal (cn) and Metastases (cm) Classifications (Clinical), New Data Item Added: Page 43: Date of Definitive Treatment {Head and Neck Cancer} Database Specification: Date of Definitive Treatment {Head and Neck Cancer} data item added: Field Name: DEFTREATDATE, Field Type: Date, Field Length: 10. v

9 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 cancer of the head and neck (ICD-10 C00.3, C00.4, C00.5, C01-C13, C14.0, C14.8, C30-C32, or C76) and (C41.0 or C41.1 where morphology of tumour is 9270/3) All patients who have had a previous primary malignancy of any site or a concurrent primary malignancy of another site A separate record should be entered for each tumour of distinct origin. However, if there are multiple tumours within the head and neck, which have the same histology, record this as one tumour. Exclude: Patients where the origin of the primary is uncertain Patients with tumour type sarcoma, lymphoma, melanoma (except mucosal), skin (including pinna) Patients with recurrent disease (as opposed to a new primary) Patients with metastases in the head and neck originating from another primary site Patients with carcinoma in situ, non-invasive tumours, or dysplasia Patients, at date of diagnosis, under 16 years of age i.e. up to 15 years 364 days Patients where the only record of their cancer is from a death certificate (DCO) Patients with normal residence outwith Scotland Patients whose definitive cancer treatment was privately funded or undertaken outwith NHS Scotland. NB: Only treatments as part of the initial treatment plan should be recorded. Patients treated within 6 months of a patient initially refusing further investigation or whose initial treatment is Watch and Wait can also be recorded. vi

10 DOWNLOAD FORMAT To assist with downloading data to ISD for the National Quality Assurance Programme and other agreed activities, all sites should be able export data according to the following specification. DATABASE SPECIFICATION Data Item Field Name Field Type Size Page Section 1: Demographic Items 1 Person Family Name (at Diagnosis) PATSNAME Characters 35 2 Person Given Name PATSFNAME Characters 35 3 Patient Postcode (at Diagnosis) PATPCODE Characters 8 4 Date Date of Birth DOB (DD/MM/CCYY) 10 5 Person Sex at Birth SEX Integer 2 6 CHI Number CHINUM Characters 10 7 Section 2: Pre-treatment Imaging & Staging Investigations 8 Location of Diagnosis {Cancer} HOSP Characters 5 9 Date Date of Diagnosis {Cancer} DIAGDATE (DD/MM/CCYY) Site of Origin of Primary Tumour {Cancer} SITE Characters 7 11 Date of Histological/Cytological Diagnosis Date HDIAG {Cancer} (DD/MM/CCYY) Imaging Completed (Pre-treatment) CTINVEST Integer 2 15 Date of Imaging Completed (Pretreatment) (DD/MM/CCYY) Date CTDATE Date Date Discussed by Care Team (MDT) MDTDATE (DD/MM/CCYY) Smoking SMOKE Integer 2 18 Smoking Cessation SMOKCESS Integer 2 19 Date Date Referred for Smoking Cessation SMOKCENDATE (DD/MM/CCYY) Date Date of Oral Assessment (Pre-operative) DENSCREEN (DD/MM/CCYY) Nutritional Screening NUTSCREEN Integer 2 22 Date Date of Nutritional Screening NUTSCREENDATE (DD/MM/CCYY) Specialist Speech and Language Therapist Access SLTASSESS Integer 2 24 Date of Specialist Speech and Language Date SLTDATE Therapist Access (DD/MM/CCYY) TNM Tumour Classification (Clinical) {Head and Neck Cancer} ct Characters 3 26 TNM Nodal Classification (Clinical) {Head and Neck Cancer} cn Characters 3 29 TNM Metastases Classification (Clinical) {Head and Neck Cancer} cm Characters 2 33 WHO/ ECOG Performance Status PSTATUS Integer 1 35 Type of First Cancer Treatment FIRSTTREATTYPE Integer 2 36 Date Date of First Cancer Treatment FIRSTTREATDATE (DD/MM/CCYY) Date of Definitive Treatment {Head and Date DEFTREATDATE Neck Cancer} (DD/MM/CCYY) vii

11 Section 3: Surgery 39 Location Code {Cancer Surgery} HOSPSURG Characters 5 40 Consultant in Charge of Surgery SURGCON Characters Date Date of Definitive Surgery SURGDATE (DD/MM/CCYY) Intent of Surgery OPINTENT Characters 2 43 Definitive Operative Procedure 1-9 {Head Characters OPCODE1 and Neck Cancer} Definitive Operative Procedure 1-9 {Head Characters OPCODE2 and Neck Cancer} Definitive Operative Procedure 1-9 {Head Characters OPCODE3 and Neck Cancer} Definitive Operative Procedure 1-9 {Head Characters OPCODE4 and Neck Cancer} Definitive Operative Procedure 1-9 {Head Characters OPCODE5 and Neck Cancer} Definitive Operative Procedure 1-9 {Head Characters OPCODE6 and Neck Cancer} Definitive Operative Procedure 1-9 {Head Characters OPCODE7 and Neck Cancer} Definitive Operative Procedure 1-9 {Head Characters OPCODE8 and Neck Cancer} Definitive Operative Procedure 1-9 {Head Characters OPCODE9 and Neck Cancer} Section 4: Pathological Details 49 Morphology of Tumour MORPHOL Characters 6 50 Surgical Margins SURGMARG Characters 4 52 Extracapsular Spread EXCAPSPREAD Integer 2 53 Section 5: Oncology 54 Location Code 1-2 {Oncology Treatment} HOSPNONSURG1 Characters 5 55 Location Code 1-2 {Oncology Treatment} HOSPNONSURG2 Characters 5 55 Date Treatment Started (Radiotherapy) Date RSTARTDATE1 {Head and Neck Cancer} (1-2) (DD/MM/CCYY) Date Treatment Started (Radiotherapy) Date RSTARTDATE2 {Head and Neck Cancer} (1-2) (DD/MM/CCYY) Date Treatment Completed (Radiotherapy) Date RCOMPDATE1 {Head and Neck Cancer} (1-2) (DD/MM/CCYY) Date Treatment Completed (Radiotherapy) Date RCOMPDATE2 {Head and Neck Cancer} (1-2) (DD/MM/CCYY) Radiotherapy Course Type {Head and Neck Cancer} (1-2) RCOURSETYPE1 Integer 2 58 Radiotherapy Course Type {Head and Neck Cancer} (1-2) RCOURSETYPE2 Integer 2 58 Intensity-Modulated Radiation Therapy (IMRT) IMRT Integer 2 59 Date Treatment Started Systemic Anti- Date CHEMDATE1 Cancer Therapy (SACT) {Cancer} 1-2 (DD/MM/CCYY) Date Treatment Started Systemic Anti- Date CHEMDATE2 Cancer Therapy (SACT) {Cancer} 1-2 (DD/MM/CCYY) Date Treatment Completed Systemic Anti- Date CHEMENDATE1 Cancer Therapy (SACT) {Cancer} 1-2 (DD/MM/CCYY) Date Treatment Completed Systemic Anti- Date CHEMENDATE2 Cancer Therapy (SACT) {Cancer} 1-2 (DD/MM/CCYY) Type of Systemic Anti-Cancer Therapy CHEMTYPE1 Integer 2 62 viii

12 (SACT) 1-2 {Head and Neck Cancer} Type of Systemic Anti-Cancer Therapy (SACT) 1-2 {Head and Neck Cancer} CHEMTYPE2 Integer 2 62 Section 6: Clinical Trial Entry 63 Patient Entered into Clinical Trial {Cancer} TRIAL Integer 2 64 Section 7: Death Details 65 Date Date of Death DOD (DD/MM/CCYY) ix

13 Section 1: Demographic Items 1

14 Person Family Name (at Diagnosis) Common Name(s): Surname, Family name Main Source of Data Item 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 at the time of diagnosis. Field Name: PATSNAME Field Type: Characters Field Length: 35 Notes for Users: 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 2

15 Person Given Name Common Name(s): Forename, Given Name, Personal Name Main Source of Data Item Standard of Standard: Government Data Standards Catalogue Definition: The forename or given name of a person. Field Name: PATSFNAME Field Type: Characters Field Length: 35 Notes for Users: 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. Where the person's preferred forename is not the first forename, the related data item 'Preferred Forename' should be used to indicate this. 3

16 Patient Postcode (at Diagnosis) Main Source of Data Item Standard: Government Data Standards Catalogue Definition: Postcode of patient's usual place of residence on the date of diagnosis Field Name: PATPCODE Field Type: Characters Field Length: Maximum 8 Notes for Users: 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 Related Data Item(s): Date of Diagnosis {Cancer} 4

17 Date of Birth Main source of Data Item Standard: Government Data Standards Catalogue Definition: The date on which a person was born or is officially deemed to have been born, as recorded on the Birth Certificate. Field Name: DOB Field Type: Date (DD/MM/CCYY) Field Length: 10 Notes for Users: If the patient's date of birth is recorded differently on different occasions, the most frequently used or latest date should be recorded. The patient's full date of birth inclusive of the century should be recorded. The format should be DD/MM/CCYY e.g. 01/02/2011. Related Data Item(s): CHI Number 5

18 Person Sex at Birth Common Name(s): Sex at Birth Main Source of Data Item Standard 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 Field Name: SEX Field Type: Integer Field Length: 2 Notes for Users: 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 Codes and Values: Code Value Explanatory Notes 01 Male 02 Female 09 Not specified/indeterminate Where it has not been possible to determine if the person is male or female at birth, e.g. intersex / hermaphrodite. 99 Not recorded Related Data Item(s): CHI Number 6

19 CHI Number Main Source of Data Item Standard 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. Field Name: CHINUM Field Type: Characters Field Length: 10 Notes for Users: 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. Related Data Item(s): Date of Birth Person Sex at Birth 7

20 Section 2: Pre-treatment Imaging & Staging Investigations 8

21 Location of Diagnosis {Cancer} Main Source of Data Item Standard: The National Audit Cancer Datasets developed by the regional Cancer Networks supported by Information Services. Definition: The patient's hospital of investigation in which the diagnosis of cancer was first made. Field Name: HOSP Field Type: Characters Field Length: 5 Notes for Users: Required for analysis purposes and clarifying responsibility for data collection. 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 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. Related Data Items: Date of Diagnosis {Cancer} 9

22 Date of Diagnosis {Cancer} Main Source of Data Item Standard: The National Cancer Audit Datasets developed by the regional Cancer Networks supported by Information Services. Definition: The date on which the cancer was first diagnosed whether by histology, cytology, immunology, cytogenetics or clinical (including radiological) methods. Field Name: DIAGDATE Field Type: Date (DD/MM/CCYY) Field length: 10 Notes for Users: Required for national survival analysis and national comparative analysis. The date recorded is the date of the first investigative procedure that confirms a diagnosis of head and neck cancer, whether by cytology, histology or other methods. If the exact date is not documented, record as 09/09/0909. The date recorded is the date the procedure was performed, not the date the report was issued. Related Data Items: Location of Diagnosis {Cancer} Date of Histological/Cytological Diagnosis {Cancer} 10

23 Site of Origin of Primary Tumour {Cancer} Main Source of Data Item Standard: The World Health Organisation (WHO) and the Cancer Registration New Data definitions for Socrates (August 1999 Version 8.0). Definition: The anatomical site of origin of the primary tumour according to the International Classification of Diseases (ICD-10). Field Name: SITE Field Type: Characters ICD-10 Field length: 7 Notes for Users: Required for QPI(s): 1-12 For ICD-10, tumours should be assigned to the subcategory that includes the point of origin of the tumour. A tumour that overlaps the boundaries of two or more subcategories and whose point of origin cannot be determined should be classified as subcategory 8. It should be noted that this subcategory should only be used where it is impossible to identify the specific site of origin of the tumour. ICD-10 codes with subcategory 9 (unspecified) should be avoided whenever possible as many codes listed ending with 9 will not map to a specific TNM stage. There are also some other ICD-10 codes listed which do not map to a specific TNM stage. All ICD-10 codes which do not map to a specific TNM stage have their values listed with an * below. If in doubt clarify the ICD-10 subcategory code with the relevant clinician. If C41 is recorded then Morphology of Tumour should be recorded as M9270/3. Codes and Values: ICD-10 Value Code Oral Cavity C00.3 Lip, inner aspect, mucosa of upper C00.4 Lip, inner aspect, mucosa of lower C00.5 Lip, inner aspect, unspecified C02.0 Tongue, dorsal surface, anterior 2/3 C02.1 Tongue, lateral border, tip of tongue C02.2 Tongue, ventral, inferior surface C02.3 Anterior parts of tongue, part unspecified C02.8 Overlapping lesion of tongue C02.9 Tongue, unspecified C03.0 Upper gum (including alveolar ridge and gingival) C03.1 Lower gum (including alveolar ridge and gingival) C03.9 Gum, unspecified C04.0 Anterior floor of mouth C04.1 Lateral floor of mouth C04.8 Overlapping lesion of floor of mouth C04.9 Floor of mouth, unspecified C05.0 Hard palate C05.8 Overlapping lesion of palate C05.9 Palate, unspecified C06.0 Cheek mucosa C06.1 Mouth, vestibule (buccal sulcus and labial) C06.2 Retromolar trigone 11

24 C06.8 Overlapping lesion of other and unspecified parts of mouth C06.9 Mouth, unspecified Salivary Glands C07.X Parotid gland C08.0 Submandibular gland C08.1 Sublingual gland C08.8 Overlapping lesion of major salivary glands C08.9 Major salivary glands, unspecified Oropharynx C01.X Base of tongue C02.4 Lingual tonsil C05.1 Soft palate C05.2 Uvula C09.0 Tonsillar fossa C09.1 Tonsillar pillar (anterior) (posterior) 1C C09.8 Overlapping lesion of tonsil C09.9 Tonsil, unspecified (faucial, palatine) C10.0 Vallecula C10.1 Anterior surface of epiglottis C10.2 Lateral wall of oropharynx C10.3 Posterior wall of oropharynx C10.4 Branchial cleft* C10.8 Overlapping lesion of oropharynx* C10.9 Oropharynx, unspecified* Nasopharynx C11.0 Superior wall of nasopsharynx (roof) C11.1 Posterior wall of nasopsharynx (adenoid, pharyngeal tonsil) C11.2 Lateral wall of nasopsharynx (fossa of rosenmuller, opening of auditory tube, pharyngeal recess) C11.3 Anterior wall of nasopharynx (floor, nasopharyngeal surface of soft palate, posterior margin of choana septum) C11.8 Overlapping lesion of nasopharynx C11.9 Nasopharynx, unspecified Hypopharynx C12.X Pyriform sinus C13.0 Postcricoid region C13.1 Ayrepiglottic fold, hypopharyngeal aspect C13.2 Posterior wall of hypopharynx C13.8 Overlapping lesion of hypopharynx C13.9 Hypopharynx, unspecified; Hypopharyngeal wall NOS; Laryngopharynx Other and ill-defined sites in lip, oral cavity and pharynx C14.0 Pharynx unspecified* C14.8 Overlapping lesion of lip, oral cavity and pharynx* Nasal cavity and middle ear C30.0 Nasal cavity; Cartilage; concha; internal; septum; vestibule C30.1 Middle ear; Eustachian tube; inner ear; mastoid air cells* 12

25 Accessory sinuses C31.0 Maxillary sinus C31.1 Ethmoidal sinus C31.2 Frontal sinus* C31.3 Sphenoidal sinus* C31.8 Overlapping lesion of accessory sinuses* C31.9 Accessory sinus, unspecified* Larynx C32.0 Glottis; intrinsic larynx; C32.0A True vocal cords C32.0B Anterior commissure C32.0C Posterior commissure C32.1 Supraglottis; extrinsic larynx; posterior (laryngeal) surface of epiglottis; ventricular bands C32.1A Suprahyoid epiglottis; (tip, laryngeal surface) C32.1B Aryepiglottic fold laryngeal aspect C32.1D Infrahyoid epiglottis C32.1E False vocal cords C32.2 Subglottis C32.3 Laryngeal cartilage* C32.3A Arytenoid cartilage* C32.3A2 Laryngeal cartilage, Arytenoid cartilage* C32.3B Cricoid cartilage* C32.3C Thyroid cartilage* C32.8 Overlapping lesion of larynx* C32.9 Larynx, unspecified* Bones C41.0 Maxilla C41.1 Mandible Ill-defined sites C76.0 Ill-defined site, head face and neck; cheek NOS; nose NOS* C99.X Not recorded* Related Data Items: 13

26 Date of Histological/Cytological Diagnosis {Cancer} Main Source of Data Item Standard: The National Audit Cancer Datasets developed by the regional Cancer Networks supported by Information Services. Definition: The date on which the head and neck cancer was first diagnosed whether by histology or cytology.. Field Name: HDIAG Format: Date (DD/MM/CCYY) Field length: 10 Notes for Users: Required for QPI(s): 1 There may be more than one biopsy/histology report. If there is a discrepancy between reports of cytology and histology, the histology report should be recorded as the definitive report if prior to treatment. If no cytological or histological diagnosis was made, record as 10/10/1010 (Not applicable) If the exact date is not documented, record as 09/09/0909 (Not recorded). The date recorded is the date the procedure was performed, not the date the report was issued. Related Data Items: Date of Diagnosis {Cancer} 14

27 Imaging Completed (Pre-treatment) Main Source of Data Item Standard: The National Cancer Audit Datasets developed by the regional Cancer Networks supported by the Information Services. Definition: A record to show that patients with head and neck cancer have complete computed tomography (CT) and/or Magnetic resonance imaging (MRI) of the primary site and draining lymph nodes with CT of the chest.. Field Name: CTINVEST Field Type: Integer Field Length: 2 Notes for Users: Required for QPI(s): 2. A CT and/or MRI of the primary site, draining lymph node and a CT of the chest should be carried out prior to treatment. The primary site, draining lymph node and chest may be assessed separately however, if all three are assessed then select 01 Codes and Values: Code Value Explanatory Notes 01 Yes Primary site, draining lymph nodes and chest assessed 02 No Primary site, draining lymph nodes and chest assessed not assessed 95 Patient declined investigations 96 Not applicable 99 Not recorded Related Data Item(s): Date of Imaging Completed (Pre-treatment) 15

28 Date of Imaging Completed (Pre-treatment) Main Source of Data Item Standard: The National Cancer Audit Datasets developed by the regional Cancer Networks supported by Information Services. Definition: This denotes the date the CT and/or MRI of the primary site, lymph node draining and chest were completed. for staging and assessment. Field Name: CTDATE Field Type: Date (DD/MM/CCYY). Field Length: 10 Notes for Users: Required for QPI(s): 2. A CT and/or MRI scan should be completed and reported by the multi-disciplinary team (MDT) for patients with head and neck cancer who are being considered for treatment with curative intent. If the patient has more than one CT and/or MRI scan the date of the final procedure is recorded. If the exact date of the CT/MRI Scan is not documented, record as 09/09/0909. If CT/MRI scan was not performed, e.g. patient refused, record as 10/10/1010 (not applicable). Related Data Item(s): Imaging Completed (Pre-treatment) 16

29 Date Discussed by Care Team (MDT) Common name: Date discussed by multidisciplinary team (MDT) {Cancer} Main Source of Data Item Standard: The National Cancer Audit Datasets developed by the regional Cancer Networks supported by Information Services. Definition: This denotes the date the care team meeting was held to discuss the management of the patient's care. Field Name: MDTDATE Field Type: Date (DD/MM/CCYY) Field Length: 10 Notes for Users: Required for QPI(s): 3 A cancer multidisciplinary care team may include surgeons, oncologists, radiologists, pathologists, nurses, speech language therapists, physiotherapists and others relevant to the treatment of a specific cancer. The team meets on a regular basis to discuss optimal patient management. Documentation of the discussion should be included in the case-note or other formal documentation. The first MDT meeting date will be recorded. If the patient has not been discussed by the MDT record as 10/10/1010 (Not applicable). If the date of the MDT meeting is unknown record as 09/09/0909 (Not recorded) Related data Item(s): 17

30 Smoking Main Source of Data Item Standard: The National Cancer Audit Datasets developed by the regional Cancer Networks supported by Information Services. Definition: This denotes if the patient is an active smoker at the time of referral (GP or other) for head and neck cancer. Field Name: SMOKE Field Type: Integer Field Length: 2 Notes for Users: Required for QPI(s): 4 A smoker is a person who is actively smoking at the time of referral to the head and neck services leading to a diagnosis of head and neck cancer. Codes and Values: Code Value 01 Yes 02 No 99 Not recorded Related data Item(s): Smoking Cessation Date Referred for Smoking Cessation 18

31 Smoking Cessation Main Source of Data Item Standard: The National Cancer Audit Datasets developed by the regional Cancer Networks supported by Information Services. Definition: This denotes whether the patient is referred for smoking cessation before first treatment. Field Name: SMOKCESS Field Type: Integer Field Length: 2 Notes for Users: Required for QPI(s): 4 Codes and Values: Code Value Explanatory Notes 01 Yes 02 No 95 Patient declined 96 Not applicable E.g. patient is a non smoker or died before being referred. 99 Not recorded Related data Item(s): Smoking Date Referred for Smoking Cessation 19

32 Date Referred for Smoking Cessation Main Source of Data Item Standard: The National Cancer Audit Datasets developed by the regional Cancer Networks supported by Information Services. Definition: This denotes the date the patient is referred for smoking cessation before first treatment. Field Name: SMOKCENDATE Field Type: Date (DD/MM/CCYY) Field Length: 10 Notes for Users: Required for QPI(s): 4 This is the date the patient s first referral for smoking cessation, which should be before they receive their first treatment. If the exact date of the referral is not documented, record as 09/09/0909. If the patient was not referred for smoking cessation, e.g. patient declined or where not applicable, record as 10/10/1010 (not applicable). Related data Item(s): Smoking Smoking Cessation 20

33 Date of Oral Assessment (Pre-operative) Main Source of Data Item Standard: The National Cancer Audit Datasets developed by the regional Cancer Networks supported by Information Services. Definition: This denotes the date when the patient has had pre-treatment dental assessment. Field Name: DENSCREEN Field Type: Date (DD/MM/CCYY) Field Length: 10 Notes for Users: Required for QPI(s): 5 Within the care spell this is the date of the first oral assessment by a dentist, which contributes to the preparation for treatment. Record the date of the patient s first assessment after referral and not the assessment that led to referral. If the exact date of the oral assessment is not documented, record as 09/09/0909. If oral screening was not performed, e.g. patient refused, record as 10/10/1010 (not applicable). Related data Item(s): 21

34 Nutritional Screening Main Source of Data Item Standard: The National Cancer Audit Datasets developed by the regional Cancer Networks supported by Information Services. Definition: This denotes whether the patient underwent nutritional screening prior to first treatment. Field Name: NUTSCREEN Field Type: Integer Field Length: 2 Notes for Users: Required for QPI(s): 6 Patient s must receive nutritional screening with the validated Malnutrition Universal Screening Tool (MUST) prior to first treatment. Code Value Explanatory Notes 01 Yes 02 No 95 Patient declined 96 Not applicable E.g. patient died before being screened. 99 Not recorded Related data Item(s): Date of Nutritional Screening 22

35 Date of Nutritional Screening Main Source of Data Item Standard: The National Cancer Audit Datasets developed by the regional Cancer Networks supported by Information Services. Definition: This denotes the date the patient underwent nutritional screening prior to first treatment. Field Name: NUTSCREENDATE Field Type: Date (DD/MM/CCYY) Field Length: 10 Notes for Users: Required for QPI(s): 6 This is the date the patient underwent nutritional screening, which should be before they receive their first treatment. If the exact date of the screening is not documented, record as 09/09/0909. If the patient did not receive nutritional screening, e.g. patient declined or where not applicable, record as 10/10/1010 (not applicable). Related data Item(s): Nutritional Screening 23

36 Specialist Speech and Language Therapist Access Main Source of Data Item Standard: The National Cancer Audit Datasets developed by the regional Cancer Networks supported by Information Services. Definition: This denotes whether the patient was seen by a Specialist Speech and Language Therapist (SLT) to assess and treat voice, speech and swallowing before treatment. Field Name: SLTASSESS Field Type: Integer Field Length: 2 Notes for Users: Required for QPI(s): 7 All head and neck cancer patients should have a pre-treatment assessment of speech and swallowing. Codes and Values: Code Value Explanatory Notes 01 Yes 02 No 95 Patient declined 96 Not applicable E.g. patient died before being assessed. 99 Not recorded Related data Item(s): Date of Specialist Speech and Language Therapist Access 24

37 Date of Specialist Speech and Language Therapist Access Main Source of Data Item Standard: The National Cancer Audit Datasets developed by the regional Cancer Networks supported by Information Services. Definition: This denotes the date when the patient was seen by a Specialist Speech and Language Therapist (SLT) to assess and treat voice, speech and swallowing before treatment. Field Name: SLTDATE Field Type: Date (DD/MM/CCYY) Field Length: 10 Notes for Users: Required for QPI(s): 7 All head and neck cancer patients should have a pre-treatment assessment of speech and swallowing. If the exact date of the SLT assessment is not documented, record as 09/09/0909. If SLT assessment was not performed, e.g. patient refused, record as 10/10/1010 (not applicable). Related data Item(s): Specialist Speech and Language Therapist Access 25

38 TNM Tumour Classification (Clinical) {Head and Neck Cancer} Common name: Clinical TNM Tumour Classification (Head and Neck Cancer) Main Source of Data Item Standard: TNM Classification (TNM Classification of Malignant Tumours, Seventh Edition, UICC, 2009). Definition: The size and extent of the tumour as determined by pre-treatment investigations (not pathological), coded according to the official TNM Classification (TNM Classification of Malignant Tumours, Seventh Edition, 2009). Field Name: ct Field Type: Characters Field length: 3 Notes for Users: Required for QPI(S): 5, 9 Clinical TNM is derived from all the clinical, radiological and biochemical results prior to treatment. The TNM system is base on the assessment of three components (T tumour, N node and M metastases) and the addition of numbers after the letter components to indicate the extent of the malignant disease. This is a pre/non-operative classification as defined by the Multidisciplinary Team Meeting (MDT) based on best knowledge. This may be at any MDT meeting up until first treatment. Codes and Values: Oral Cavity Code Value Explanatory Notes TX Primary tumour cannot be assessed T1 2cm in greatest dimension T2 > 2 to 4cm in greatest dimension T3 T4a T4b > 4cm in greatest dimension Tumour invades adjacent structures Lip through cortical bone, inferior alveolar nerve, floor of mouth, or skin (chin or nose). or Oral Cavity through cortical bone, into deep/extrinsic muscle of tongue (genioglossus,hyglossus, palatoglossus, and styloglossus), maxillary sinus, or skin of face Lip and Oral Cavity tumour invades masticator space, pterygold plates, or skull base, or encases internal carotid artery 96 T Classification Not applicable 99 T Classification Not recorded/not known Pharynx -Oropharynx Code Value Explanatory Notes TX Primary tumour cannot be assessed T1 2cm in greatest dimension T2 > 2 to 4cm in greatest dimension T3 > 4cm in greatest dimension or extension to lingual surface of epiglottis. T4a Tumour invades any of the following: larynx, deep/extrinsic muscle of tongue (genioglossus,hyglossus, palatoglossus, and styloglossus), medial pterygoid, hard palate, or mandible (Mucosal extension to lingual surface of epiglottis from primary tumours of the base of the tongue and vallecula does not constitute invasion of the larynx). T4b Tumour invades any of the following: lateral pterygoid muscle, 26

39 pterygoid plates, lateral nasopharynx, skull base; or encases carotid artery 96 T Classification Not applicable 99 T Classification Not recorded/not known Pharynx - Hypopharynx Code Value Explanatory Notes TX Primary tumour cannot be assessed T1 limited to one subsite of hypopharynx and/or 2cm in greatest dimension T2 Invades more >1 subsite of hypopharynx or an adjacent site, or > 2cm and 4cm in greatest dimension, without fixation of hemilarynx T3 > 4cm in greatest dimension or with fixation of hemilarynx or extension to oesophagus T4a Tumour invades any of the following: thyroid/cricoid cartilage, hyoid bone, thyroid gland, oesophagus, central compartment soft tissue (including prelaryngeal strap muscles and subcutaneous fat). T4b Tumour invades prevertebral fascia, encases carotid artery, or invades mediastinal structures 96 T Classification Not applicable 99 T Classification Not recorded/not known Pharynx - Nasopharynx Code Value Explanatory Notes TX Primary tumour cannot be assessed T1 Tumour confined to nasopharynx, or extends to oropharynx and/or nasal cavity T2 Tumour with parapharyngeal extension (postero-lateral infiltration of tumour T3 Invades bony structures of skull base and/or paranasal sinuses T4 With intracranial extension and/or involvement of cranial nerves, hypopharynx, orbit, or with extension to the infratemporal fossa/masticator space 96 T Classification Not applicable 99 T Classification Not recorded/not known Larynx - Supraglottis Code Value Explanatory Notes TX Primary tumour cannot be assessed T1 Limited to one subsite of supraglottis with normal vocal cord mobility T2 Invades mucosa of >1 adjacent subsite of supraglottis or glottis or region outside the supraglottis (e.g. mucosa of base of tongue, vallecula, medial wall of piriform sinus) without fixation of the larynx T3 Limited to larynx with vocal cord fixation and/or invades any of the following: postcricoid area, pre-epiglottic space, paraglottic space, and/or inner cortex of thyroid cartilage T4a Invades through thyroid cartilage, and/or invades tissue beyond the larynx, e.g., trachea, soft tissues of the neck including deep/extrinsic muscle of tongue (genioglossus, hyglossus, palaglossus, and styloglossus), strap muscles, thyroid, oesophagus T4b Invades prevertebral space, encases carotid artery, or mediastinal structures 96 T Classification Not applicable 99 T Classification Not recorded/not known 27

40 Larynx - Glottis Code Value Explanatory Notes TX Primary tumour cannot be assessed T1 Limited to vocal cord(s) (may involve anterior or posterior commissure) with normal mobility: (a) Limited to one vocal cord (b) Involves both vocal cords T2 Extends to supraglottis and/or subglottis and/or with impaired vocal cord mobility T3 Limited to larynx with vocal cord fixation and/or invades paraglottic space, and/or inner cortex of the thyroid cartilage T4a Invades through outer cortex of the thyroid cartilage, and/or invades tissues beyond the larynx, e.g. trachea, soft tissues of neck including deep/extrinsic muscle of tongue (genioglossus, hyglossus, palaglossus, and styloglossus), strap muscles, thyroid, oesophagus T4b Invades prevertebral space, encases carotid artery, or mediastinal structures 96 T Classification Not applicable 99 T Classification Not recorded/not known Larynx - Subglottis Code Value Explanatory Notes TX Primary tumour cannot be assessed T1 Limited to subglottis T2 Extends to vocal cord(s) with normal or impaired mobility T3 Limited to larynx with vocal cord fixation T4a Invades cricoid or thyroid cartilage and/or invades tissues beyond the larynx, e.g. trachea, soft tissues of neck, including deep/extrinsic muscle of tongue (genioglossus, hyglossus, palaglossus, and styloglossus),strap muscles, thyroid, oesophagus T4b Invades prevertebral space, encases carotid artery, or mediastinal structures 96 T Classification Not applicable 99 T Classification Not recorded/not known Nasal Cavity and Paranasal Sinuses - Maxillary Sinus Code Value Explanatory Notes TX Primary tumour cannot be assessed T1 Limited to mucosa with no erosion or destruction of bone T2 Causing bone erosion or destruction, including extension into hard palate and/or middle nasal meatus, except extension to posterior wall of maxillary sinus and pterygoid plates. T3 Invades any of the following: bone of posterior wall of maxillary sinus, subcutaneous tissues, floor of medial wall of orbit, pterygoid fossa, ethmoid sinuses T4a Invades any of the following: anterior orbital contents, skin of cheek, pterygoid plates, infratemporal fossa, cribiform plate, sphenoid or frontal sinuses T4b Invades any of the following: orbital apex, dura, brain, middle cranial fossa, cranial nerves other than maxillary division of trigeminal nerve (V2), nasopharynx, or clivas 96 T Classification Not applicable 99 T Classification Not recorded/not known Nasal Cavity and Paranasal Sinuses Nasal Cavity and Ethmoid Sinus Code Value Explanatory Notes 28

41 TX T1 T2 T3 T4a T4b Primary tumour cannot be assessed Restricted to one subsite of nasal cavity or ethmoid sinus, with or without bony invasion Involves two subsites in a single site or extends to involve an adjacent site within the nesoethmoidfal complex, with or without bony invasion Extends to invade the medial wall or floor of the orbit, maxillary sinus, palate, or cribriform plates Tumour invades any of the following: anterior orbital contents, skin of nose or cheek, minimal extension to anterior cranial fossa, pterygoid plates, sphenoid or frontal sinuses Tumour invades any of the following; orbital apex, dura, brain, middle cranial fossa, cranial nerves other than V2, nasopharynx, or clivas 96 T Classification Not applicable 99 T Classification Not recorded/not known Salivary Glands Code Value Explanatory Notes TX Primary tumour cannot be assessed T1 2cm in greatest dimension without extraparenchymal extension (extraparenchymal extension is clinical or macroscopic evidence of invasion of soft tissue or nerve, except those listed under T4a and T4b. Microscopic evidence alone does not constitute extraparenchymal extension for classification purposes) T2 > 2cm to 4cm in greatest dimension without extraparenchymal extension (extraparenchymal extension is clinical or macroscopic evidence of invasion of soft tissue or nerve, except those listed under T4a and T4b. Microscopic evidence alone does not constitute extraparenchymal extension for classification purposes) T3 > 4cm in greatest dimension and/or with extraparenchymal extension (extraparenchymal extension is clinical or macroscopic evidence of invasion of soft tissue or nerve, except those listed under T4a and T4b. Microscopic evidence alone does not constitute extraparenchymal extension for classification purposes) T4a Invades skin, mandiable, ear canal, and/or facial nerve T4b Invades base of skull, and/or pterygoid plates, and/or encases carotid artery 96 T Classification Not applicable 99 T Classification Not recorded/not known Bone Code Value Explanatory Notes TX Primary tumour cannot be assessed T1 8cm in greatest dimension T2 > 8cm in greatest dimension T3 Discontinuous tumours in the primary bone site 96 T Classification Not applicable 99 T Classification Not recorded/not known Related data items: TNM Nodal Classification (Clinical) {Head and Neck Cancer} TNM Metastases Classification (Clinical) {Head and Neck Cancer} TNM Nodal Classification (Clinical) {Head and Neck Cancer} 29