Principal Investigators: 
Award Amount: 

The Roger Wilson Research Award 

Patient experience is central to measuring the quality of care in the NHS, and government policy encourages the use of patient-reported outcomes (PRO) to facilitate patient-clinician communication. However, patients with sarcoma may have experiences which are not reflected accurately with standard or generic PRO measures (PROMs). The aim of this project is to develop a sarcoma-specific PROM (S-PROM) and a strategy to incorporate this into clinical practice.

The study will include three stages:  

Stage 1 Is the development of the S-PROM questionnaire. This will involve a review of the literature and in-depth exploration of patients’ experience of sarcoma through semi-structured interviews/focus groups. The S-PROM will be developed with patients and key stakeholders based on these results. It will be pre-tested to ensure questions are understood and interpreted consistently.

Stage 2 Involves sending the S-PROM to a large number of patients with sarcoma with additional questionnaires that measure similar aspects to the S-PROM. Statistical tests will be used to confirm that the S-PROM measures do what is intended (validity) and that it does so consistently (reliability).  

Stage 3 Involves workshops with patients and key stakeholders to establish how the S-PROM could be used in practice.   

The key deliverables/outcomes include:  

  • an outcome measure specific for patients with sarcoma (S-PROM).  
  • a drafted strategy for implementing the S-PROM into clinical practice across the UK.  
  • an in-depth understanding of patients’ experience of diagnosis, treatment and living with sarcoma, which can help inform future service development.
  • new qualitative and quantitative data for secondary data analysis. 



  • Ana Martin. Poster presented at the British Sarcoma Group Conference. March 2017. Bristol, UK.
  • Ana Martin et al. Identifying common experiences amongst sarcoma patients. The first phase in developing a sarcoma-specific patient-reported outcome measure. Presented at NCRI Conference, 2017. Liverpool, UK.


  • Ana Martin. Presentation given at the Scottish Sarcoma Network Meeting. September 2017. Glasgow, UK.

Patients Recruited

  • 119 patients involved in this study.
Project status: