This study aims to explore and understand what it is like to be diagnosed and treated for sarcoma from the aspect of what matters most to the patient, and how this impacts them after completing their treatment.

It is known that patients with sarcoma (a type of cancer that includes primary bone cancer) often have more problems during and after their treatment in comparison to some other cancers. This include physical effects of the cancer as well as how well patients feel in themselves. It is also reported that patients with sarcoma report their diagnosis and treatment experience to be not as good as patients with other cancer types.

In order to find out exactly what these problems are, and how things can be improved, this project will produce a Sarcoma-Specific Patient-Reported Outcome Measure (or S-PROM for short). The S-PROM will be developed following informal interviews with patients in order to evaluate which services need to be changed for the better.

This project hopes to discover the key things that really matter to patients with sarcoma and measure outcomes which are important to patients’ other than clinical outcomes such as survival. This aims to improve patient experience as a whole.

The end goal for this project is the development of an S-PROM that can be used in clinical environments in order to improve sarcoma patients quality-of-life and their communication with healthcare professionals; allowing the patient to be more involved in decisions made about their healthcare and the services they receive.

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