Status: Open
Specialty: Colorectal
Date Opened: 11/07/2025
Planned Close Date: 31/12/2025
Sponsor: Imperial College London
Principal Investigator: Amanda Alty
Study Title: 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.
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.
The primary care CRN will send a link to patients on their database with a previous diagnosis of cancer and who have previously consented to be contacted to participate in research.
Direct patient self-enrolment having become aware of the study via one of the communication methods being used in the study (e.g., physical signage in healthcare providers, community centres, physical newsletters and community papers, social media, charities making their members aware of the study).
INCLUSION CRITERIA
1. Anyone who was over the age of 16 when they were diagnosed with any type of cancer who has completed their initial cancer treatment. If no treatment received then more than 12 months from diagnosis.
2. Participants who self-identify as having previously (time unlimited) received a diagnosis of cancer, based on histological, radiological, or clinical grounds (primary and/ or metastatic cancer). Current treatment is not a barrier to participation, but the emphasis is on patients who have completed treatment.
3. They need to be able to access the secure online platform, using a mobile device or computer.
4. Have capacity and be able to provide informed consent.
5. To be able to understand, read and write English.
EXCLUSION CRITERIA
1. Participants recently diagnosed with cancer (less than 12 months ago).
2. Participants unable to access secure online platform.
3. Participants who do not have sufficiently good understanding of written English to complete the PROMs and are unable to be supported by a trusted individual to complete the questionnaire.
4. Participants lacking capacity and unable to give informed consent.
Lead Research Nurse: Mandie Alty (x2031) amanda.alty@lthtr.nhs.uk
Link to EDGE