Developing and validating SAM

• Research type

  Research Study

• Full title

  Study to develop and validate a sarcoma-specific outcome questionnaire: the Sarcoma Assessment Measure (SAM): PHASE 1 (Stages 2 & 3), PHASE 2 & PHASE 3

• IRAS ID

  230903

• Contact name

  Rachel Taylor

• Contact email

  rtaylor13@nhs.net

• Sponsor organisation

  University College London Hospitals NHS FoundationTrust

• Duration of Study in the UK

  1 years, 5 months, 29 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, the Sarcoma Assessment Measure (SAM) 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 (stages 2 & 3), PHASE 2 & 3 ARE THE FOCUS OF THIS APPLICATION

  In Phase 1, stage 1 interviews were conducted with 121 patients. NUMBER questions to include in SAM were taken from these interviews. Through a series of stages patients and healthcare professionals will be reviewing the questions through structured evaluation to identify those that most important and cause most worry; questions that are most relevant and then test that these are understandable to patients. The final version of SAM will be tested against an existing quality of life measure and a measure of emotional well-being. The final phase will involve workshops with healthcare professionals, patients and other key stakeholders to develop a strategy for implementing SAM in practice.

• REC name

  London - Riverside Research Ethics Committee

• REC reference

  18/LO/0023

• Date of REC Opinion

  19 Jan 2018

• REC opinion

  Favourable Opinion