A person’s fear of their sarcoma returning (known as recurrence) can have a huge impact on their quality of life. This project explored the nature of fear of recurrence in patients with sarcoma, leading to the development of an intervention to help patients manage this difficult issue.
Fear of cancer recurrence (FCR) is a well-known problem but is rarely studied for sarcoma patients even though recurrence rates are higher than for most other solid/tumour producing cancers. It is separate from scanxiety which is a lower level concern around scans. The research team had previously carried out a large study of 1000 sarcoma patients and most of them mentioned fear and anxiety as an issue. The researchers wanted to understand the problem better so they could develop ways to help people experiencing it.
How did this project tackle this challenge?
The team looked again at the results from the previous study and used the information about fear of recurrence to design a new survey. They worked with a sarcoma patient advisory group at all stages. Over two hundred sarcoma patients completed the online survey, providing information on levels of fear of recurrence and the things that affected it. The original plan was to take the results from the survey to patient workshops to explore the issue further and then a round of focus groups with healthcare professionals. Finally, the information would be used to plan an intervention study which would be funded separately.
Was it successful?
The second-look at the first study found fear of recurrence did not differ between types of sarcoma but that it decreased with age and the time since diagnosis. Women, people who were single or those who identified as having a disability experienced higher levels of FCR whilst those who were either in education or were retired displayed lower levels. FCR was linked to poorer quality of life and having symptoms. Delays, including Covid19, meant that the workshops and focus groups have not yet taken place.
You can read a full study published as a result of this research here.
What this means for people affected by sarcoma
This study provides an excellent base upon which to develop an intervention to help reduce FCR in sarcoma patients. What that intervention will look like will depend on what the workshops and focus groups discover. Ultimately the hope would be that sarcoma patients are supported fully after diagnosis and therefore do not experience such highs levels of anxiety and FCR.
The project builds on previous work by the same research group, also funded by Sarcoma UK.
“Fear of recurrence is known to be one of the most impacting consequences of a cancer diagnosis. We know that there are ways of helping patients manage fear of recurrence so it doesn’t take over their life, but it is important that we understand how many people experience it, and the factors that can influence it so we can develop an intervention that will specifically support patients with sarcoma.” – Rachel Taylor