Information Specification

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

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

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

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

Core data items should be collected for all cancers. To reduce replication of information, Core data items have not been listed in this site-specific Standard and users should refer to National Cancer Data Standards for Wales – Core (DSCN 2019/09) 1. National Cancer Data Set - Full list DSCNs.xlsx (live.com) for a list of Core requirements. However, in some cases, the site-specific application of Core data items may differ e.g. a particular tumour site may require additional or fewer codes to those already published in Core, or perhaps have additional business rules as to how the Core data item should be coded. Where this occurs, the Core data item will be replicated in the site-specific Standard with the respective additional site-specific detail. These are flagged in the following table with an * next to the data item name.

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

Data Item	Definition	Format	Code List (Code)	Code List (Text)	Status	COSD
Key Investigations. (Multiples can be added)
Date of Image Request	The date on which imaging is requested that contributes to pre-treatment staging	ccyymmdd	N/A	N/A	R	N/A
Diagnosis. (One occurrence of this group)
Date Patient Informed of Diagnosis	The date the patient was informed whether malignant or downgrade.	ccyymmdd	N/A	N/A	R	N/A
Date GP Informed of Diagnosis	The date the GP was informed of the patients diagnosis.	ccyymmdd	N/A	N/A	R	N/A
Date Referral Made to Smoking Cessation Service	The date the referral was made to the smoking cessation service	ccyymmdd	N/A	N/A	R	N/A
Pre-Treatment Assessment. To carry pre-treatment assessment details for Head and Neck cancer. (May be up to one occurrence for this group)
Cancer Dental Assessment Date	The date of the first dental assessment by a dentally qualified practitioner which contributes to preparation for treatment.	ccyymmdd	N/A	N/A	R	Cancer Dental Assessment Date
Cancer Dental Extraction Required	Specify if the patient required pre-treatment dental extraction/s	Code List	Y	Yes	R	N/A
Cancer Dental Extraction Required		Code List	N	No	R	N/A
Date Cancer Dental Extraction Performed	The date that the pre-treatment dental extraction/s was performed (Only required if Yes recorded for data item 'Cancer Dental Extraction Required'	ccyymmdd	N/A	N/A	R	N/A
Care Contact Date (Dietitian Initial)	The date that the patient was first assessed by a Dietitian	ccyymmdd	N/A	N/A	R	Care Contact Date (Dietitian Initial)
Care Contact Date (Speech and Language Therapist (SLT) Initial)	The date that the patient was first assessed by a speech and language therapist	ccyymmdd	N/A	N/A	R	Care Contact Date (SLT Initial)
Surgery. To carry Surgery details for Head and Neck cancer. (May be up to one occurrence of this group per Core - Surgery)
Surgical Access Type	Select the appropriate surgical access type used for the patients operation from the following types	Code List	1	Mandibulotomy	R	Surgical Access Type
			2	Lip split and Mandibulotomy
			3	Weber Ferguson Approach
			4	Drop through the Neck
			8	Other (Specify)
			9	Not Known/Not Recorded
Other Surgical Access Type	If Other (Specify) is recorded for Surgical Access Type, specify what surgical access type was used	max an60	N/A	N/A	R	Other Surgical Access Type
Pathology - General - Various sites. To carry pathology details for various head and neck cancer. (One occurrence per Path Report)
Date of Pathology Report	The date the pathology report was reported	ccyymmdd	N/A	N/A	R	N/A
Maximum Depth of Invasion	The maximum depth of invasion in mm. Record as 00 to indicate 'not applicable'. (NOTE: This is not applicable for nasopharynx, hypopharynx, nasal cavity or sinuses)	max n3	N/A	N/A	R	Maximum Depth of Invasion
Bone Invasion	Is there evidence of invasion into bone	Code List	1	Present	R	Bone Invasion
			2	Absent
			3	Not assessed
			4	Not applicable
Cartilage Invasion	Is there evidence of invasion into cartilage	Code List	1	Present	R	Cartilage Invasion
			2	Absent
			3	Not assessed
			4	Not applicable
Neck Dissection Laterality	Identify laterality of neck dissection, if performed	Code List	1	Left	R	Neck Dissection Laterality
			2	Right
			3	Bilateral
			4	Not performed
			8	Not applicable
Perineural Invasion	Is there evidence of perineural invasion	Code List	1	Present (Yes)	R	N/A
Perineural Invasion	Is there evidence of perineural invasion	Code List	2	Absent (No)	R	N/A
Pathology - Salivary. To carry salivary pathology details for head and neck cancer. (One occurrence per Path Report)
Macroscopic Extraglandular Extension	Macroscopic extension of tumour outside the capsule of the salivary gland	Code List	1	Present (Yes)	M	Macroscopic Extraglandular Extension
Macroscopic Extraglandular Extension		Code List	2	Absent (No)	M	Macroscopic Extraglandular Extension
Grade of Differentiation (Pathological) *	Grade of Differentiation (Pathological) is the definitive grade of the tumour based on the evidence from a pathological examination Note: In Core there are codes of G4 (Undifferentiated/anaplastic) and GX (Grade of differentiation is not appropriate or cannot be assessed). Those codes are not applicable to Salivary tumours.	Code List	G1	Well differentiated	R	Grade of Differentiation (Pathological)
			G2	Moderately differentiated
			G3	Poorly differentiated
Pathology - General & Salivary. (One occurrence per Path Report)
Positive Nodes Laterality	If nodes positive, specify laterality	Code List	1	Left	R	Positive Nodes Laterality
			2	Right
			3	Bilateral
			8	Not applicable
Largest Metastasis Left Neck	If Neck dissected on Left side, the size in mm of the largest metastasis	max n3	N/A	N/A	R	Largest Metastasis Left Neck
Largest Metastasis Right Neck	If Neck dissected on Right side, the size in mm of the largest metastasis	max n3	N/A	N/A	R	Largest Metastasis Right Neck
Extracapsular Spread	Invasion of metastatic tumour outside the capsule of a lymph node	Code List	1	Present	R	Extracapsular Spread
			2	Absent
			3	Not assessable
Pathology - Human Papilloma Virus (HPV). (One occurrence per Path Report)
p16 Testing Indicator	Indicate the result of p16 Immunohistochemistry	Code List	P	Positive	R	p16 Testing Indicator
			N	Negative
			X	Not Performed/Not Known
HPV-ISH Testing	Indicate the result of HPV-ISH testing (Human Papilloma Virus - In Situ Hybridisation)	Code List	P	Positive	R	HPV-ISH Testing
			N	Negative
			X	Not Performed/Not Known
Post-Treatment Assessment. To carry post treatment assessment details for Head and Neck cancer. (Multiple occurrences for this group). COSD recommend information should be recorded 12 months post diagnosis as a minimum and annually thereafter, if possible
Clinical Status Assessment Date (Cancer)	The date on which a clinical assessment was performed	ccyymmdd	N/A	N/A	R	Clinical Status Assessment Date (Cancer)
Primary Tumour Status	The status of the primary tumour at this follow up contact	Code List	1	Residual primary tumour	R	Primary Tumour Status
			2	No evidence of primary tumour
			3	Recurrent primary tumour
			4	Not assessed
			5	Uncertain
Nodal Status	The status of the regional nodal metastases at this follow up contact	Code List	1	Residual regional nodal metastases	R	Nodal Status
			2	No evidence of regional nodal metastases
			3	New regional nodal metastases
			4	Not assessed
			5	Uncertain
Metastatic Status	The status of the distant metastases at this follow up contact	Code List	1	Residual distant metastases	R	Metastatic Status
			2	No evidence of metastases
			3	New distant metastases
			4	Not assessed
			5	Uncertain
Speech and Language Assessment Date	Record the date of contact where assessment swallowing occurs following completion of treatment. Whilst ideally data is entered at each contact after completion of treatment, key point of recording is at 6 months post cancer care plan agreed date	ccyymmdd	N/A	N/A	R	Speech and Language Assessment Date