CPR Workstream 5: PROMs
Research type
Research Study
Full title
Comprehensive Patient Records (CPR) for Cancer Outcomes: A feasibility study Workstream 5: Patient Reported Outcome Measures (PROMs)
IRAS ID
233983
Contact name
Geoff Hall
Contact email
Sponsor organisation
Head of Research Integrity and Governance at the University of Leeds
Duration of Study in the UK
1 years, 6 months, 29 days
Research summary
Comprehensive Patient Records (CPR) for Cancer Outcomes
More people are living with and beyond a cancer diagnosis. The impact of cancer does not stop when treatment is over. There is limited understanding of the long-term effects of cancer and cancer treatment. The purpose of the main CPR study is to securely link information that is de-identified (has all identifiable markers such as name, address and date of birth removed) from electronic GP and community health records, to de-identified data from hospital records. This information will provide a broad picture of what happens to cancer patients across their cancer pathway and treatment. Ethical approval has been granted for the main study.
CPR Workstream 5
PROMs (Patient Recorded 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. The objective of Workstream 5 is to measure cancer survivors’ own perceptions of their health, quality of life and financial costs. Workstream 5 will take a smaller sample from the main study’s population 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 selected PROMs will measure: finance, health, symptoms, psychological problems, navigating the healthcare system, relationships and barriers to exercise. The PROMs data will then be linked to de-identified data from patients' GP, community health and hospital records using the secure systems for data linkage approved for the main study. The overall aim is to create a truly ‘comprehensive patient record’ showing the long-term effects of cancer on quality of life, health and well-being.
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
18/NE/0217
Date of REC Opinion
10 Sep 2018
REC opinion
Further Information Favourable Opinion