- Rachel Taylor, Ana Martins, Lorna Fern, Jeremy Whelan, Rachel Windsor: University College London Hospitals NHS Foundation Trust
- Julie Woodford, Craig Gerrand: The Royal National Orthopaedic Hospital
- Lesley Storey: Birmingham City University
- Mary Wells: Imperial Hospital Healthcare NHS Trust
- Maria Onasanya, Lindsey Bennister: patient representatives.
Funded by Sarcoma UK (SUK 102.2016LG).
Background to the study
Introducing patient-reported outcome measures (PROM) into clinical practice is known to improve patient-clinician communication and thus may impact on patient experiences and outcomes. Selecting the questionnaire that best represents the patient’s experiences is the most important factor for successfully introducing PROMs. While there are many generic cancer PROMs these may not capture issues that are important to patients with sarcoma. The sarcoma-specific PROMs that are currently available have only been validated for children and young people with bone tumours (Bt-DUX) or subtypes of soft tissue sarcoma.
What were our aims?
The aim of this project was to develop and validate a sarcoma-specific PROM – the Sarcoma Assessment Measure (SAM) and to develop a strategy for maximising its utility in practice. This was a mixed-methods study based on recommended methodology for developing a PROM comprising of three phases:
- Phase 1: Developing SAM
- Phase 2: Psychometric testing of the questionnaire
- Phase 3: Developing a strategy to implement SAM into clinical practice.
What did we do?
What did we find?
In Phase 1 we interviewed 121 people aged 13 to 82 years who had soft tissue sarcoma (62%), bone tumours (28%) and GIST (10%). From these interviews we identified 1,405 items reflecting physical, emotional, social and financial wellbeing and sexuality. Working with patients and clinicians we reduced this list to 395 items that we could send out in a questionnaire. This Item Reduction Questionnaire (IRQ) asked patients to rate how important each item was and how frequently it had occurred, which enabled us to calculate how much of an impact each item had on a person.
The IRQ was returned by 250 patients aged 17 to 89 years. We found that 68% of the most impactful items related to emotional wellbeing. However, to ensure SAM was balanced to represent physical, emotional, social, financial wellbeing and sexuality the top items in each area were included for review by clinicians. Items that were similar to those in other questionnaires were removed and 66 were chosen through consensus as items reflecting issues clinical teams could provide patients with support.
Thirty-three patients reviewed the 66 items, and 22 finally selected to be included in SAM. Recruitment to Phase 2 was completed in August 2019: the results will be published here in early 2022.