Principal Investigators: 
Institution: 
Award Amount: 
£119,464

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. 

Outputs

Publications

Posters

  • Martins, A. Poster presented at the British Sarcoma Group Conference. March, 2017 Bristol, UK.
  • Poster presented at the National Cancer Research Institute Conference. November, 2017. Liverpool, UK.
  • Storey, L. et al. “Why do we need SAM”? A narrative review of the impact of sarcoma on psychosocial wellbeing. Poster presented at the British Sarcoma Group Conference. February, 2018. Birmingham, UK
  • Martins, A., Taylor, R. M & Plant, H. The value of clinical supervision role in qualitative research practice - case study analysis. Poster presented at the British Psychosocial Oncology Society (BPOS) Conference. March, 2018. Southampton, UK.
  • Martins, A. et al. A national collaboration to develop a sarcoma-specific patient report outcome measure. Poster presented at the British Sarcoma Group Conference. March, 2017. Bristol, UK.
  • Martins, A. et al. Exploring the experiences of patients undergoing treatment and surviving with bone cancer. Poster presented at the Bone Cancer Research Trust Conference. July, 2017. Birmingham, UK.
  • Martins, A. et al. Identifying common experiences amongst sarcoma patients. The first phase in developing a sarcoma-specific patient-reported outcome measure. Poster presented at the National Cancer Research Institute (NCRI) Cancer Conference. November, 2017. Liverpool, UK.
  • Martins, A. et al. Advancing practice using patient-reported outcome measures: A national collaboration to develop SAM. Poster presented at the Royal College of Nursing (RCN) International Nursing Research Conference. April 2018. Birmingham, UK.
  • Martins, A. et al. “I just hate my face. It’s so different, and because it doesn’t work properly” – experiences of patients with head and neck sarcoma. Poster presentation at the UK Oncology Nursing Society (UKONS) Annual Conference. November, 2018. Glasgow, UK.
  • Martins, A. et al. Experiences of patients with bone cancer: the role of illness and development trajectories, healthcare professionals, social support and coping strategies. Poster presented at The Connective Tissue Oncology Society (CTOS). November, 2018. Rome, Italy.
  • Martins, A. et al. Phase 1 in developing a sarcoma-specific patient-reported outcome measure in the UK: exploring patient’s experiences. Poster presentation at the European MusculoSkeletal Oncology Society (ESMOS) meeting. May, 2018. Amsterdam, Netherlands.

Presentations & Workshops

  • Martins, A. Presentation given at the Scottish Sarcoma Network meeting. September, 2017. Glasgow, UK.
  • Taylor, R. Working on “Quality of Life (QoL)” for sarcoma patients: Development of SAM (Sarcoma Assessment Measure). Presentation given at the 8th SPAEN Annual Conference. February, 2018. Milan, Italy
  • Taylor, R. Quality of Life and PROMs Plenary: SAM – a Sarcoma specific QOL tool. Presentation at the British Sarcoma Group Conference. February, 2018. Birmingham, UK.
  • Taylor, R. Challenges in developing sarcoma-specific tools. Workshop ran at the British Sarcoma Group Conference. February, 2018. Birmingham, UK.
  • Martins, A. et al. A national collaboration to develop a sarcoma-specific patient report outcome measure: Phase 1 - Exploring patient experiences. Presented at the British Sarcoma Group Conference. February, 2018. Birmingham, UK.
  • Martins, A. et al. Exploring patient experiences of being diagnosed, treated and living with sarcoma – Phase 1 in developing a sarcoma-specific patient-reported outcome measure. Presented at the British Sarcoma Group Conference. February, 2018. Birmingham, UK.
  • Martins, A. et al. SAM (Sarcoma Assessment Measure) – Sarcoma Assessment Measure Phase 1: Patient experience. Presentation at the Bone Cancer Research Trust Conference. June, 2018. Birmingham, UK.
  • Woodford, J., Taylor, R.M. & Martins, A. Interactive workshop with the delegates of the NSF to identify the clinical utility of SAM. Presentation at the British Sarcoma Group Conference, February, 2019. London, UK.
  • Martins, A. et al. “The Clinical Nurse Specialist was really a stable point for me to go to for any sort of information or support” – the role of professionals’ expertise and support in patients’ experience. Presented at the British Sarcoma Group Annual Conference. February, 2019. London, UK.
  • Martins, A. et al. Measuring what matters: developing the content of the Sarcoma Assessment Measure (SAM). Presented at the British Sarcoma Group Annual Conference. February, 2019. London, UK.
  • Martins, A. et al. A qualitative exploration of the experiences of teenagers and young adults with sarcoma. Presented at the British Sarcoma Group Conference. February, 2019. London, UK.
  • Martins, A. et al. ‘My identity had just been completely devastated’ – experiences of adolescent and young adults with sarcoma. Presented at the Qualitative Health Research Network Conference. March, 2019. London.

Patients Recruited

  • 418 patients involved in this study

Other

  • Martins, A. et al. won the best poster award at the 2018 UKONS Annual Conference.
Project status: 
open