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 eye cancer between 2013 and 2020.
The cohort of eye cancers used for Get Data Out is all tumours coded in ICD10 to C69.
The cohort is first split by the year of diagnosis.
Tumours were classified based on their site as defined by ICD-10 into three groups as outlined in table 1 in the appendix below, under column name ‘Site group’. Tumours were split into those of the eyeball and tumours around the eyeball as they are very different and are treated differently. Furthermore, ‘Orbit and lacrimal gland and duct cancers’ and ‘Overlapping lesions of the eye and adnexa and unspecified cancers’ were separated as ‘Orbit and lacrimal gland and duct cancers’ are very specific and are treated in a specific way, whereas ‘Overlapping lesions of eye and adnexa and unspecified cancers’ is a more generic group of other tumours that are found around the eyeball.
Tumours of ‘Cancers of the eyeball’ are then split by morphology as defined by ICD-O3. There are four different morphological groups: ‘Conjunctival squamous cell carcinoma’, ‘Ocular melanoma’, ‘Retinoblastoma’ and ‘Unspecified and other’. Please see table 2 in the appendix which details the morphology definitions.
Tumours classified as ‘Ocular melanoma’ are then split by ICD-10 site to create two groups. One being the more common ‘Uveal melanoma’ and the other being ‘Conjunctival melanoma’. These two types of melanoma are very different from one another in terms of behaviour and treatment. Please see column name ‘Ocular site group’ in table 1 for the definitions of these groups.
Tumours of ‘Uveal melanoma’ tumour type 3 are then split by patient age at diagnosis. These age splits have been designed to ensure the groups are meaningful and that the numbers in the groups do not become too small. There was a strong opinion to consider a younger age band within the partition as people of ‘childbearing age’ are affected by this condition and might be considered to have different treatment types. The following partition was agreed:
Cohort and classifications were created with a working group including consultant Guy Negretti from Surrey and Sussex Healthcare NHS Trust, Petra Maxwell from the Childhood Eye Cancer Trust, Jo Gumbs from OcuMel UK and analysts Charles Stiller and Lucy Irvine from NCRAS.