Dr Rachel Taylor
University College London Hospitals
Awarded: £119,464
The challenge
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.
How will this project tackle this challenge?
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.
What this means for people affected by sarcoma
Through this project, the team aim to develop an outcome measure specific for patients with sarcoma, to fill a real gap in patient care, as well as a drafted strategy for implementing the S-PROM into clinical practice across the UK. The work carried out on this project will also provide an in-depth understanding of patients’ experience of diagnosis, treatment and living with sarcoma, which can help inform future service development.
The project was followed up with a similar study by the same research group, also funded by Sarcoma UK.
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).
