Yorkshire Cancer Research Bowel Cancer Improvement Program

ABSTRACT: Background and study aims Bowel cancer affects 3,300 people a year within Yorkshire and the Humber. Over the next five years over 6,000 people in Yorkshire and the Humber will die of bowel cancer. This study wants to greatly reduce this number, decrease the number of deaths and improve the patients’ experience of their care. The management of bowel cancer and outcomes for patients across Yorkshire and the Humber differs. This study wants to understand why there is a difference and then improve outcomes by addressing these issues. The study will use data collected during the diagnosis and treatment of patients with bowel cancer in the NHS. This data has been linked together by the National Cancer Registration and Analysis Service (NCRAS) and provides basic information about bowel cancer care across the region. This study will improve this information by consenting patients and collecting new data via patient reported outcome measures (PROMS) and will also collect additional data from radiology and pathology to improve the data that is held. The study team will analyse this data to find areas that can be improved and work with the clinical teams to provide educational events and improvements. The study team will assess the differences made to the care and outcome of bowel cancer patients across the region. The overall aim of this programme of work is to work out how much bowel cancer outcomes can be improved by working with bowel cancer multidisciplinary teams (MDTs), collecting and feeding back to them high quality information and providing training and supervision for specialists where a need is found. The primary aims of the study are: 1. To develop high quality cancer information to evaluate the outcomes for patients with bowel cancer across Yorkshire and the Humber 2. To describe the quality of life of newly diagnosed bowel cancer patients close to the time of diagnosis. This will provide a starting point to measure differences in quality of life across Yorkshire and Humber. 3. To explore the issues that may be able to predict the quality of life of patients 12 months after diagnosis. 4. To collect tissue for testing to show whether certain chemotherapy drugs can be used to improve outcomes. 5. To support the introduction of NICE recommended Lynch testing in the region. Lynch Syndrome is an inherited disorder that increases the risk of many types of cancer, particularly bowel cancer. Who can participate? Patients over the age of 18 with bowel cancer who live in the Yorkshire and Humber region of the UK and who are treated at one of the 14 participating hospital trusts What does the study involve? The study involves asking patients to agree to complete two questionnaires; one shortly after diagnosis but before they have had their first treatment, and the second questionnaire 12 months after their diagnosis. These questionnaires can be completed online or on paper. The study also asks for agreement for some of the tissue that has been removed during the patient’s surgery for bowel cancer to be sent to the University of Leeds study teams so that additional tests can be performed on the tissue.

DISEASE(S): Colorectal Cancer

PROVIDER: 2411691 | ecrin-mdr-crc |

REPOSITORIES: ECRIN MDR