Improving sarcoma care part 2

Sarcomas are rare cancers of connective tissue. They are complex as they can appear anywhere in the body and at any age.

There are two main types of sarcomas, and they make up about 1% of all cancers diagnosed in England. These are:

• soft tissue sarcomas, appearing in muscles, blood vessels or other soft tissues
• bone sarcomas, can appear in any part of any bone and in some rare cases start in soft tissue

This was the first population-based study of soft tissue sarcomas in England. The analysis describes the incidence and survival of 16 morphological subtypes*, composed of 84 unique descriptions of disease, between 2013 and 2017.

*When describing these diseases, they are often referred to according to their morphologies (the type of cell, the shape and its structure).

The research also uncovered new data on ultra rare sarcomas, (less than 1 in a million diagnosis) such as epithelioid sarcoma and alveolar soft part sarcoma, many of which have never been described in national data before.

Additional information on key prognostic indicators such as age, sex, routes to diagnosis and deprivation we also included.

Many sarcomas are challenging to treat and have poor survival rates, and there is very limited data available detailing incidence and survival of soft tissue sarcomas owing to the rarity of disease.

 In the United Kingdom all patients with a suspected bone or soft tissue sarcoma should be referred to a specialist sarcoma service to ensure appropriate multidisciplinary care is given when diagnosing disease and managing treatment, which frequently requires specialist surgical input.

Given the importance of specialist centres for the management of disease the use of national cancer data is extremely valuable resource for benchmarking and informing the clinical and research communities as well as offering a means of supporting service provision standardisation of care.

This work has helped to understand key information about factors that affect treatment, care, and survival rates in people with sarcoma. Alongside other papers on incidence and outcome of Breast Sarcomas in England and Primary retroperitoneal Sarcoma, this can help identify where changes can be made to improve outcomes for patients.

Long term this will lead to improvements in the care being delivered, for example revealing findings about deprivation, which shows that patients in the most deprived areas of the country are 22% more likely to die within 5 years than patients that come from the least deprived areas. This may be due to a lack of access to specialist centres.

Data for the study was based on patient level information collected by the National Disease Registration Service (NDRS). The data was gathered for patients diagnosed between January 2013 and December 2017, and included patient demographics collected by the Cancer Outcomes and Services dataset, as well as survival statistics from the Office of National Statistics (ONS).

The project was a collaboration between Sarcoma UK, University College London (UCL) and NDRS.

To see more please visit the full study on the Wiley online library

Sarcoma UK have developed an interactive dashboard and data hub to display this data to a public and healthcare professional audience.

The team also led a webinar in May 2023 on 'breakthroughs in sarcoma cancer data: implication for patient care'