Professor Rachel Taylor
University College London Hospital
Awarded: £119,464
Recent research brings new insights into how sarcoma affects daily people’s lives and wellbeing. Researchers worked closely with the sarcoma community to understand these impacts.
Key findings
- The team created a new patient-reported outcome measure (called SAM) specifically for sarcoma patients. The tool better measures how sarcoma affects quality of life, based on real patient experiences
- They interviewed sarcoma patients to understand how the disease affects people in different ways
- This tool is now being used in national and international clinical trials, helping doctors and patients communicate better and improve care
What is a patient-reported outcome measure?
An outcome measure helps track how well a treatment is working. This could be:
- Physical changes that doctors measure – like blood test results
- Changes that patients report themselves – like pain levels or side effects
A patient-reported outcome measure is a way for patients to tell their healthcare team about how they’re feeling and how treatment is affecting them – like changes in pain levels, daily activities, or side effects. Unlike medical tests, it captures experiences directly from patients themselves.
What the researchers did
Professor Rachel Taylor and her team at UCLH developed the new outcome measure through several steps.
They began by interviewing a diverse group of sarcoma patients with different experiences of the disease. Using these interviews, they created a questionnaire with 22 questions about physical, emotional, and social wellbeing. They then tested the questionnaire with patients and healthcare professionals to make sure it was accurate and useful.
All this information helped them create SAM – a new outcome measure specifically designed to capture the real-life experiences of sarcoma patients.
What this means for patients
SAM is now being used in many clinical trials in the UK and around the world. It has helped make conversations between patients and doctors easier and clearer and improved patients’ experience during treatment.
Next steps
Thanks to this research being widely shared in journals, work is now underway to develop a new version of SAM for children with sarcoma.
Researchers are also looking deeper into people’s experiences of getting diagnosed with sarcoma.
We would not have been able to fund such vital research without your generous donations.
Help us improve outcomes for people affected by sarcoma by supporting our research programme.
