Following the success of National Sarcoma Survey in 2015 and the invaluable data it collected, Sarcoma UK decided to re-run the survey in 2020 with a broadened purpose: to collect data on sarcoma patient experience in order to build an evidence-base for influencing. This was also expanded beyond adult sarcoma patients to include children with sarcoma and family and carers of those with sarcoma.
Once again, the results from the survey have created a robust dataset. The data has allowed us to build a clearer picture of patients’ experience of the diagnosis, treatment and emotional impact of sarcoma. It has both drawn attention to and given evidence for areas where further policy and campaigning work can be undertaken.
Adult patient demographics:
- 71% of respondents had soft tissue sarcoma, 16% had a bone sarcoma, and 14% had a GIST.
- 71% were female, 29% were male.
- Over a third of the respondents (38%) were aged between 41 and 55; 28% were aged between 56 and 70; and 3% were aged 16 to 24; 20% were aged 25 to 40; 9% were aged 71-80, and 1% were older than 80.
- A vast majority (85%) were treated in England, 10% in Scotland, and 2% for each of Wales and Northern Ireland.
- 25% of respondents said that their diagnosis and treatment of sarcoma has severely negatively affected their overall mental health.
- 9 in 10 patients said their diagnosis or treatment had a negative impact on their mental health or wellbeing.
- 45% of patients said they were not given enough information when they were first diagnosed.
- 2 in 5 said they were not given enough emotional support throughout the duration of their treatment.