Taking care of your health while living with or beyond cancer
Research type
Research Study
Full title
Taking care of your health while living with or beyond cancer: a questionnaire study
IRAS ID
351770
Contact name
Rosalind Adam
Contact email
Sponsor organisation
University of Aberdeen
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Cancer survival is improving. People living with and beyond cancer face complex treatment regimens and long-term self-management of symptoms, side effects, and possible recurrence. Treatment burden is the workload of healthcare and self-management (e.g., taking and managing medications, attending appointments) and the negative impact this can have on individuals. Treatment burden has been widely explored in long-term conditions such as diabetes as well as in multimorbidity and has been established as an important consideration in cancer that may drive inequities in outcomes. To date, most research in cancer has used qualitative methods or objective measures to assess treatment burden (e.g., number of medications or healthcare encounters). Patient-reported outcome measures (PROMs) have been developed to assess treatment burden in multimorbidity and other health conditions. Limited research has used these PROMs in cancer, or compared treatment burden across different cancer sites, stages, points in the disease trajectory and treatment modalities.
This study aims to quantify patient-reported treatment burden in cancer, investigate predictors of treatment burden, and examine any association between treatment burden and adherence to treatment or quality of life. We will undertake a cross-sectional questionnaire study that will include measures of treatment burden, patient capacity, psychological factors, treatment adherence, and quality of life. We will compare treatment burden between different cancer sites, stages, points in trajectory, and treatment modalities.
Participants will include those who have ever had a cancer diagnosis (excluding non-melanoma skin cancer). We will recruit patients via general practices, oncology outpatient clinics, The Scottish Health Research Register and Biobank (SHARE), charities and support organisations, social media, and professional networks. We aim to recruit a minimum of 2000 people in the UK.
Multiple regression analyses or structural equation modelling will be used to assess the relationship between sociodemographic factors, patient capacity, psychological factors, treatment burden, and health outcomes.
REC name
London - West London & GTAC Research Ethics Committee
REC reference
25/PR/0719
Date of REC Opinion
11 Jun 2025
REC opinion
Favourable Opinion