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.