Dr Rachel Taylor
University College London Hospitals
There is limited research on fear of recurrence (FoR) in patients with sarcoma, however it is an issue which can have a huge impact on a person’s psychological wellbeing. Previous work by the same research group, also funded by Sarcoma UK, collected data from over 1000 people with a previous sarcoma diagnosis and FoR was reported as a problem by the majority of these patients.
How will this project tackle this challenge?
This study will explore the nature of FoR in sarcoma patients, with the aim of developing an intervention to manage it. This will be done by initially performing analysis of the group’s existing data looking for factors associated with FoR. A patient survey about FoR will also be administered in order to determine the prevalence and severity of identified factors. The results will then be compared to existing literature to determine if interventions developed for other cancer types are relevant for sarcoma.
Workshops will then be undertaken with healthcare professionals to determine how potential interventions could be supported in practice, and with patients in order to determine the barriers, facilitators and acceptability of the potential interventions.
Finally the group will identify a clinical trials unit with expertise in delivering non-drug trials, who will be co-applicants on a subsequent grant application. A workshop will be held with patients/healthcare professionals to define the best study design and outcome measures.
The key outcome from this study will be an intervention and national study designed to test this intervention, ready to submit for additional funding.
How will this project help people affected by sarcoma?
Understanding what it’s like to be diagnosed and live with sarcoma is really important if we want to design the best possible care and services. Being able to capture changes in the quality of those experiences can also be vital for knowing what difference a potential treatment is having, and put clinicians in a better position to help people affected by sarcoma.
Fear of recurrence is known to be one of the most impacting consequences of a cancer diagnosis. This can have profound influence on people’s lives, to the extent that it can stop some people moving forward and living their lives as they had planned before a cancer diagnosis. There has been a lot of research done with patients with other cancer types, such as breast, bowel and prostate cancer but very little has been done to look at fear of recurrence in patients with sarcoma. 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. – Dr Rachel Taylor