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 Get Data Out tables for the 2023 release of data on tumours of the bladder, urethra, renal pelvis and ureter between 2013 and 2020.
The cohort of bladder, urethra, renal pelvis and ureter tumours used for Get Data Out is all tumours coded in ICD-10 and ICD-O-3.1 to:
This cohort contains all registered tumours of the bladder, renal pelvis and ureter with all behaviours. It also contains all in situ and malignant tumours of the urethra and other and unspecified urinary organs as ‘Urethra’. Tumours of uncertain or unknown behaviour of the urethra, other urinary organs and urinary organ unspecified (ICD-10 D41.3, D41.7 and D419) have been excluded as numbers of these non-malignant tumours are very small.
ICD-10 code D09.1 refers to “Carcinoma in situ of other and unspecified urinary organs”; in order to identify the specific site of these tumours we also refer to ICD-O-3.1 site which gives the location of the tumour, hence allowing us to include these tumours in the cohort within the correct site.
Transitional cell carcinomas (TCCs) (ICD-O-3.1 8120, 8122, 8130 or 8131) are a morphology type that usually occurs in the renal pelvis, and does not occur in the main body of the kidney. However, as the renal pelvis is physically inside the kidney, historically these tumours have been miscoded to the kidney. Validations now exist on the NCRAS system to prevent such registrations being made. However, some tumours have already been registered to kidney sites (C64 or D41.0 or (D09.1 with ICD-O-3.1 code C64)). For the purposes of this grouping, they have been included as if coded to the renal pelvis. These are at kidney sites with transitional cell carcinoma morphology: ICD-O-3 8120, 8122, 8130 or 8131. This problem has been solved in cancer registration data from 2017 onwards.
The Urethra group consists of malignant and in situ neoplasms of urethra, paraurethral gland, overlapping lesions of urinary organs and urinary organ, unspecified. It is not split any further in this grouping.
Please note that this cohort may differ from others produced by ONS and NCRAS.
The cohort is first split by the year of diagnosis.
The tumours are then split by the Tumour Type defined above into “Bladder”, “Renal Pelvis and Ureter” and “Urethra”.
Renal Pelvis and Ureter and Bladder groups are each split by behaviour as defined below.
Groups of tumours of uncertain or unknown behaviour are not split further.
The group of Malignant and in situ tumours of the Bladder are further split by morphology as defined below.
(Due to smaller numbers, no other groups are split by morphology.)
The Urothelial group includes most ‘non-specific’ morphologies on the assumption that the majority of these tumours are urothelial.
Malignant and in situ Bladder tumours (both Urothelial and Other) and Malignant and in situ tumours of the Renal Pelvis and Ureter are split by muscle-invasiveness in the first stage split.
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.
In some rare cases, the registry may hold contradictory information about the stage of a tumour, for example T-component of stage = 2 and overall stage 0. We have worked with registry coding experts to determine which variable to use preferentially in these cases. A summary table of these decisions can be found in Appendix A. These contradictions affect fewer than 0.1% of our cohort.
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.
The groups of non-muscle-invasive renal pelvis and ureter tumours and urothelial bladder tumours have been further split by the T component of TNM stage.
The groups of Ta/Tis urothelial bladder tumours and renal pelvis and ureter tumours have been split by the T-component of TNM stage, into three groups:
The urothelial muscle invasive and malignant and in situ muscle invasive renal pelvis and ureter groups have been split by spread. Categories are: Localised, Locally advanced, Metastatic, and Spread unknown.
Please note that the staging system for these bladder cancers changed from TNM 7 to TNM 8 between 2017 and 2018 diagnoses. This could affect definitions of features such as ‘muscle invasive’ or ‘Ta’. However we have reviewed the changes, and at the level of GDO groupings we do not think the change in staging system has changed the GDO groups.
The groups of urethera; uncertain or unknown bladder; localised, locally advanced, metastatic and spread unknown urothelial musce-invasive; T1 (for both bladder and renal pelvis); Tis bladder; the Grade 1&2 for Ta/Tis NOS urothelial bladder and Ta renal pelvis and ureter tumours; Grade 1,Grade 2, Grade 3 and Grade 4 Ta muscle invasive are further split by gender.
Female uncertain or unknown bladder tumours, male locally advanced muscle-invasive urothelial tumours, male muscle-invasive malignant and in situ renale pelvis and ureter, both the male and female muscle-invasive other malignant and in situ bladder tumours and female Grade 1 Ta non-muscle-invasive urothelial malignant and in situ bladder tumours are further split by age into 00-69, 70+.
Both the male and female stage unknown malignant and in situ renal and pelvis tumours and the female stage unknown urothelial malignant and in situ bladder tumours and female Grade 3 Ta non-muscle-invasive urothelial malignant and in situ bladder tumours were split into 00-79, 80+.
Male urethra tumours, male uncertain or unknown bladder tumours, female localised muscle-invasive urothelial tumours, male stage unknown urothelial malignant and in situ bladder tumours and both the male and female T1 non-muscle-invasive urothelial bladder tumours, male Tis non-muscle-invasive urothelial bladder tumours, male Grade 1&2 Ta/Tis NOS urothelial bladder tumours, male Grade 1&2 Ta non-muscle-invasive malignant and in situ renal pelvis and ureter tumours, male Grade 1 Ta non-muscle-invasive urothelial malignant and in situ bladder tumours and both female Grade 2 and male Grade 3 Ta non-muscle-invasive urothelial malignant and in situ bladder tumours are further split by age into 00-69, 70-79 and 80+.
Male localised muscle-invasive urothelial tumours are further split by age into 00-59, 60-69, 70-79 and 80+.
Male Grade 2 Ta non-muscle-invasive urothelial malignant and in situ bladder tumours are further split by age into 00-49, 50-59, 60-69, 70-79, 80+.
Urothelial bladder tumours in the Ta group are further split by Grade. Categories are Grade 1, Grade 2, Grade 3 and Grade unknown.
The older (70-79, 80+), male groups of T1 and Grade 2 Ta non-muscle invasive malignant and in situ urothelial bladder cancers are further split by region. Categories are: London, Midlands and East of England, North of England, South of England.
Cohort and classifications were created with a working group including consultant urologist Hugh Mostafid from Royal Surrey County NHS Foundation Trust, Dr Lydia Makaroff from Fight Bladder Cancer and Allen Knight from Action Bladder Cancer, pathologist Dr Brian Rous and analysts Luke Hounsome and Nicola Cooper at NCRAS.