The Get Data Out programme routinely publishes cancer statistics produced by NHS D (previously PHE) in a consistent table, called the Get Data Out (GDO) table. This table collects patients into groups with common characteristics, and then publishes information such as incidence, treatment rates, survival and Routes to Diagnosis for these groups.
This document sets out the definitions of the cohort and groups in the Get Data Out tables for the 2023 release of data on head and neck cancers, between 2013 and 2020.
The cohort of head and neck cancers used for Get Data Out is all cancers with an ICD 10 code between C00 and C14 or between C30 and C32.
In order to align with other publications on head and neck cancer, this cohort does not include cancers of the thyroid, eye, bones of the head or lymph nodes. These cancers will be included in other Get Data Out groups. The cohort does include cancers of the lip; cancers of the inner lip have been grouped within the oral cavity group whereas external lip cancers have been considered in a separate group, as they have more in common with skin cancers.
The cohort only includes primary cancers and does not include secondary head and neck cancers that have metastasised from elsewhere in the body.
Cancers were classified by site (ICD 10) into 10 groups:
Please see the Appendix below for the ICD 10 definitions of these groups.
Where numbers allow, tumour type groups were split by stage at diagnosis. A full stage breakdown was used for the tumour type groups ‘larynx including anterior surface of epiglottis’, ‘oral cavity’ and ‘oropharynx including base of tongue, soft palate and tonsils’:
For tumours of the ‘major salivary glands’ the following stage split was used:
For tumours of the ‘nasal cavity and sinus’ the following stage split was used:
Please note that the staging system for these head and neck cancers changed from TNM 7 to TNM 8 between 2017 and 2018 diagnoses, which is seen most prominently in the data between 2018 and 2019. We believe that this changing definition reduces the number of ‘Oropharynx including base of tongue, soft palate and tonsils’ tumours that were diagnosed at stage 4 and increases the number diagnosed at stage 1 and 2. Care must be taken if analysing the GDO data as a time series - the decrease in stage 4 tumours is being driven at least in part by the coding artifact of the changing stage system.
The registration of 2019 tumours were being completed during the COVID-19 pandemic. This led to reduced access to the usual data sources, and despite the registry’s best efforts a noticeable decrease in data quality in some fields. This is most commonly seen in an increase in ‘stage unknown’ tumours, and a corresponding decrease in other stage groups. This should be noted when undertaking time-series analysis on the data.
The vast majority of cases are staged in either the UICC 7 or UICC 8 system, where the recommended staging system changed from UICC 7 to UICC 8 between 2017 and 2018 diagnoses. A very small percentage of cancers (less than 1%, apart from 2013 where the UICC 6 system was used to stage 1.052%), were staged in other systems, as reported in the known limitations page. The following table shows the percentage of cases staged in each of UICC7 and UICC8 over time.
Where groups were large enough, a general age split was used of:
A younger age split was chosen for tumours of the ‘oropharynx including base of tongue, soft palate and tonsils’ of:
For groups with a lower number of patients, a broader age breakdown of 0-69 and 70+ was used, or 0-59 and 60+ for oropharynx where possible.
Classifications were created with Mr Cyrus Kerawala from The Royal Marsden and Rebecca Girdler and Dr Brian Rous at NCRAS.