The Improving Cancer Aftercare Study (ICAS) Version 1
Research type
Research Study
Full title
The Improving Cancer Aftercare Study. Using patient and caregiver experiences to improve health services for people after prostate and colorectal cancer.
IRAS ID
269788
Contact name
Rosalind Adam
Contact email
Sponsor organisation
University of Aberdeen
Duration of Study in the UK
1 years, 2 months, 18 days
Research summary
Research Summary
This is a qualitative interview study which will investigate treatment burden after prostate and colorectal cancer. Treatment burden is the workload of healthcare for patients and the consequences of this workload on patient function. Treatment burden is a relatively recent concept that is under-investigated in cancer. We will also explore patient and caregiver opinions about prostate and colorectal cancer aftercare, including potential areas for service improvement. \n\nWe will invite some patients to take part in a subsequent video interview with the researcher in which key findings will be explored further. We intend to make between three and five patient videos. Videos will be professionally filmed and edited by Medical Illustration at the University of Aberdeen. Video narratives can be a powerful way of sharing key messages. We intend to show video interviews at co-design events in which healthcare professionals, patients, researchers, designers, and others come together to design new systems of cancer follow up. They will help designers to focus on real-world issues and problems. Videos will also be used to help patient voices to be heard more widely.
Summary of Results
Treatment burden is the workload of managing one's own health and the impact this has on individuals. In the study, we wanted to find out about treatment burden in survivors of prostate and colorectal cancer and their caregivers. We invited 163 people to take part in an interview through their general practices. Thirty-five cancer survivors and 6 caregivers took part, this included 22 prostate cancer survivors and 13 colorectal cancer survivors. We looked for common themes and messages across the interviews. The idea of 'burden' did not resonate with most people and often, participants were grateful for treatment because it improved their symptoms or survival. Managing cancer was time-consuming but this reduced over time. There were different things which could protect people from treatment burden or could make it more likely they would experience burden. Some of these things could be changed such as how health services are organised. Managing more than one condition (multimorbidity) could increase risk of treatment burden but having a caregiver who helped with managing cancer could reduce treatment burden. Treatment burden is important in cancer, and doctors and other healthcare professionals should think about the tasks they are asking cancer patients to do and whether they have the support needed.
REC name
North of Scotland Research Ethics Committee 1
REC reference
19/NS/0158
Date of REC Opinion
30 Oct 2019
REC opinion
Further Information Favourable Opinion