The Get Data Out programme routinely publishes cancer statistics produced by NHS E (previously PHE and NHS D) 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 for the Get Data Out tables for the 2023 release of data on lung, mesothelioma, and other thoracic tumours between 2013 and 2020.
The cohort of lung, mesothelioma, and other thoracic tumours used for Get Data Out is all tumours coded to C33, C34, C37, C38, C39, and C45 in ICD 10. These ICD 10 codes cover all primary tumours of lung, bronchus, and trachea, all primary tumours of the thymus, all primary tumours of the heart, mediastinum and pleura, all primary tumours of other and ill-defined sites in the respiratory system and intrathoracic organs, and all primary mesotheliomas.
The cohort is first split by the year of diagnosis.
Tumours were classified based on their site, as defined by ICD 10, into ‘Lung, bronchus, and trachea’. ‘Thymus’, ‘Heart, mediastinum, pleura, other and ill-defined’, and ‘Mesothelioma’.
These groupings are defined by:
Due to the relatively small size of the thymus group in each individual year, this group is not split any further.
The lung, bronchus, and trachea group is further split by ICD-O-3 morphology code into non-small-cell lung cancer (NSCLC), and small-cell lung cancer (SCLC), as defined in the Tumour Type 2 column of the morphology table in Appendix 1.
The heart, mediastinum, pleura, other and ill-defined group is further split by site as defined by ICD 10 into:
The heart, mediastinum, and pleura groups are not split any further.
The mesothelioma group is further split by site as defined in ICD 10 into:
The NSCLC group is subdivided into groups based on the basis of diagnosis, into:
The NSCLC, pathologically confirmed group, is further split by ICD-O-3 morphology code into Adenocarcinoma, Carcinoid, Squamous cell, and Other as defined in the Tumour Type 3 column of the morphology table in Appendix 1.
(Only very small numbers of lung cancers have a specific morphology in registry data without pathological confirmation. However as GDO only includes pathologically confirmed tumours in the adenocarcinoma, carcinoid, and squamous cell groups, numbers in these groups may be slightly smaller than other published estimates of these groups.)
The pleural mesothelioma group is split into four distinct morphology groups as follows:
The SCLC group, and the NSCLC groups Adenocarcinoma, Carcinoid, Squamous cell, Other, and Not pathologically confirmed, are next split by stage. The SCLC group is split into:
Each of the NSCLC groups are split into:
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%), 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.
Performance status is a measurement which describes the patient’s level of functioning in terms of their daily activity and physical ability (walking, working, etc.). There are 5 grades which are registered on the Eastern Cooperative Oncology Group (ECOG) scale which are:
Performance status needs to be assessed and collected at diagnosis for this field to be completed. Because of this some patients are recorded as ‘Performance status unknown’. We are aware that the performance status data in 2013 and 2014 has a relatively high proportion of unknowns. We are working to improve the data completeness in these years by pulling in data from the national lung cancer audit and this will be included in future releases.
Where numbers allow, the stage groups are split into six individual groups of patients with performance status 0, 1, 2, 3, 4 and Unknown separately. For stage groups with smaller counts, patients with performance status 3 and 4 are grouped together, and when necessary patients with performance status 0,1 and 2 are also grouped together.
Patients with unknown stage are not split by performance status, as the data quality is not good enough for this split.
The carcinoid NSCLC cancers are rare. Although they are split by stage, no further split by performance status is possible.
Age splits are provided for the performance status groups where they are large enough. The specific age split used depends on the size of the group, and the splits are:
Age splits are also provided for the NSCLC stage Unknown groups, except for carcinoids of unknown stage as the group is too small for the split. The SCLC stage unknown group is not split by age due to the size of the group.
The stage 1 carcinoid NSCLC cancer group is split into 0-69, 70+
Where numbers allow the data is then split into male and female.
The mesothelioma data is split by age before stage. Each of the four pleural mesothelioma morphology groups are split by age into:
(The periotoneal mesothelioma and other mesothelioma groups are too rare to be split further)
The age groups of epithelioid mesothlioma and mesothelioma NOS (the two larger types of plural mesothelioma) are further split by stage into:
There are no further splits for mesothelioma.