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 for Get Data Out tables for the 2022 release of data on Kaposi sarcoma between 2013 and 2019.

Kaposi sarcoma cohort

The cohort of Kaposi sarcomas used by Get Data Out is defined in ICD-10 as all tumours coded to C46.

This group is not split any further, annual figures only will be produced for this group.

Cancer registration is based on routine flows of data from pathology laboratories, Multidisciplinary Teams (MDTs) treating patients with cancer, and death certifications. If patients with Kaposi sarcoma are not managed in a cancer setting (for example, they are treated in a GUM/HIV clinic and have no pathological confirmation of their diagnosis) the cancer registry may miss these cases, and the incidence reported could be an underestimate. However, in correspondence with a GUM clinic they said that they would aim to biopsy all their cases, and that they expected at least 90% of Kaposi sarcoma cases were pathologically confirmed, in which case we would expect the data to flow to the registry.

Net cancer survival compares the survival of patients diagnosed with a given cancer to the baseline survival of an average person of the same age. This usually allows us to estimate the probability of surviving cancer in the absence of other causes of death. However, as Kaposi sarcoma in England is mostly seen in people with an advanced HIV infection, it is likely that comparing the cohort to the average English person (instead of to a cohort who have advanced HIV, but not Kaposi sarcoma) is underestimating the true net survival due to cancer.