With the Sarcoma Group, Lesley Storey is in the process of developing a Patient Reported Outcome Measure. The group would like to get the view of health professionals about what they see patients identifying as important and have asked the following email to be circulated:
We are in the process of developing the Sarcoma Assessment Measure (SAM) and are currently administering a questionnaire to patients with sarcoma containing 393 items reflecting their experience, as described in interviews with 121 patients from across the UK. The Item Reduction Questionnaire (IRQ) asks patients to rate what they think is most important and what they worry most about. We will take the results of this and compare against existing quality of life measures to determine whether these capture all the issues important to patients.
The primary aim of developing SAM is to develop a tool that could be used in clinical practice to help direct patient conversations so we are therefore interested in exploring what healthcare professionals think patients think is important and they worry about.
We would like to invite you to complete the IRQ. The IRQ is split into 5 domains: physical wellbeing, emotional wellbeing, social wellbeing, financial wellbeing and sexuality. To make this less burdensome for you to complete, we have split the online version into the 5 domains. The links are below, please complete as many as you can. There is nothing in the questionnaire to identify you so your response is completely anonymous.
We would like to get responses from as many people in the MDT as possible so please circulate this to your team. Thank you in advance for supporting the SAM study.
Dr Rachel Taylor (Senior Research Fellow), Professor Jeremy Whelan (Professor of Medical Oncology) and Dr Ana Martins (Sarcoma UK Research Associate)