Developing the content of the S-PROM

• Research type

  Research Study

• Full title

  Study to develop the content for a sarcoma-specific patient-reported outcome measure (S-PROM: PHASE 1, stage 1

• IRAS ID

  217605

• Contact name

  Rachel Taylor

• Contact email

  rtaylor13@nhs.net

• Sponsor organisation

  University College London Hospitals NHS Foundation Trust

• Duration of Study in the UK

  1 years, 0 months, 30 days

• Research summary

  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. There is currently no sarcoma-specific PROM.

  The aim of this project is to develop and validate a sarcoma-specific PROM (S-PROM) and to develop a strategy for maximising its utility in practice.

  This is a mixed methods study based on recommended methodology for developing a PROM comprising of three phases:

  Phase 1: Developing the S-PROM
  Stage 1: item generation
  Stage 2: item reduction
  Stage 3: pre-testing
  Phase 2: Psychometric testing of the questionnaire
  Phase 3: Developing a strategy to implement S-PROM into clinical practice

  PHASE 1, STAGE 1 IS THE FOCUS OF THIS APPLICATION

  Patients will be invited to take part in interviews, focus groups or write about their experiences of being diagnosed, treated and living with sarcoma. The aim is to understand from the patient’s perspective how sarcoma affects physical, emotional and social aspects of their lives. This could include the challenges they need to overcome but also to identify positive impacts on their life.

  The interviews/focus groups will be recorded and transcribed verbatim. Analysis will involve listing all the different experiences and looking if there are differences according to different factors, such as type of sarcoma and age. This list will be the basis for Stage 2, which will be submitted as a separate application.

• REC name

  London - Stanmore Research Ethics Committee

• REC reference

  16/LO/2152

• Date of REC Opinion

  5 Jan 2017

• REC opinion

  Further Information Favourable Opinion