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INDIGO Community: Investigating DIGital Outcomes in a community setting for patients living with and beyond a diagnosis of cancer. To understand more about the long-term outcomes and service use of patients living with and beyond a diagnosis of cancer Phase II randomised feasibility research administering questionnaires in a mixed methods study.
Safe People
Organisation name
University Hospital Southampton
Applicant name(s)
Funders/ Sponsors
Safe Projects
Project ID
SDE_WXS_PROJ_101
Lay summary
We can use questionnaires to help us understand how a patient feels about their quality of life (QOL) and experiences of care. These surveys are called Patient-Reported Outcome Measures (PROMS). PROMS have been used in research to understand patients’ quality of life. However, more needs to be done to understand the quality of life for patients in the long-term following a diagnosis of cancer. To do this, we need to understand how to engage participants in this type of research so that we can deliver high volumes of PROMS responses. We will then be in a position to develop a greater understanding of quality of life in those living with and beyond cancer in the long term. We also do not know what services patients use in the community to help them manage the long-term effects of their cancer or its treatment with the aim of improving their quality of life. Using a digital survey tool, we hope we can run a project that will help us understand more about the lives of patients after treatment for cancer. We plan to see which PROM allow participants to express their quality of life as rated by the participants. We also want to study how we can keep the amount of time and effort needed to complete the questionnaires as low as possible. All patients over the age of 16 who have had any type of cancer in the past can take part. Patients will access the survey at a time that suits them using a digital link. They can complete the survey once or if they chose, a second time 12 months later.
Public benefit statement
Enhance long-term outcome tracking to improve survivorship care and service planning.
Other approval committees
Latest approval date
15/05/2025
Safe Data
Dataset(s) name
Cohort identification – identifying adult patients diagnosed with any type of cancer who completed treatment over the past year.
Safe Setting
Access type
TRE