Exploring the experiences of patients undergoing treatment and surviving with bone cancer
Professor Jeremy Whelan, Dr Rachel Taylor, Ms Lindsey Bennister, Dr Lorna Fern, Mr Craig Gerrand, Ms Julie Woodford, Professor Mary Wells, Dr Lesley Storey, Dr. Rachael Windsor
University College London Hospitals NHS Foundation Trust
It is known that patients with primary bone cancer often have more problems during and after their treatment in comparison to some other cancers; which include the physical effects of the cancer and how well patients feel in themselves. It is also reported that patients with primary bone cancer 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, a new project funded by Sarcoma UK 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 wider project will examine patients with all forms of sarcoma, including soft-tissue sarcomas. About 3,800 new cases of sarcoma are diagnosed each year in the UK, and of these, around 500 people will be diagnosed with primary bone cancer.
We at the Bone Cancer Research have funded £10,000 towards the project in order to discover the key things that really matter to patients with primary bone cancer and measure outcomes which are important to patients’, and not just clinical outcomes such as survival, in order to improve the patients’ 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.