Patient-Reported Outcome Measures

Patient-Reported Outcome Measures (PROMs)

The PROMs (Patient Recorded Outcome Measures) work-stream is using a survey to investigate cancer survivors’ own views of the impact that living with and beyond a cancer diagnosis is having on their everyday life.

 

We will follow on from the main project’s task of solving the legal, ethical and technical difficulties associated with safely and securely linking patients’ data. We hope to show what great work can be done when GP and hospital data talk to each other. Take a look below at the benefits of this work-stream’s activities.

Why?

By including cancer survivors’ own views, we can:

  • Examine the long-term quality of life, social, psychological and financial impacts of cancer.
  • Compare the everyday lives of people who are living with a cancer diagnosis, to those who have not been diagnosed with cancer.
  • Create a truly comprehensive patient record by linking survey data with de-identified primary care and hospital records data.

How?

 

PROMs (Patient Reported Outcome Measures) are used for patients to record their own opinions about their health, treatment quality of life and other issues. PROMs are usually in the form of questionnaires. Workstream 5 will take a smaller sample of cancer survivors included in the main study, and collect PROMs directly from them. The PROMs survey will be sent to breast, colorectal and ovarian cancer survivors at around 5 years since diagnosis, and a sample of non-cancer controls for comparison. The survey can be completed online or by post. The survey will assess quality of life, finance, health, symptoms, psychological and social issues, navigating around the healthcare system, relationships and barriers to exercise.

 

Who We Are

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Meet The Team

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Dr Penny Wright

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Prof Galina Velikova

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Dr Gemma Clarke

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Dr Elizabeth Stamp

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Public Engagement

Patient involvement and public engagement has been key to designing and carrying out PROMs Workstream 5. We have spoken to people living with and beyond a cancer diagnosis to help inform our research.

For example, we used a “wordwall” activity with cancer survivors at support groups. This, involved cancer survivors ranking a list of topics in order of how relevant they were to their life (e.g., fatigue/tiredness, barriers to exercise, financial problems). This helped us to decide which topics to put into the survey.