Measuring and quantifying treatment burden in individuals living with and beyond cancer: a scoping review

Abstract

Treatment burden - the workload of managing long-term health conditions and the impact this can have - could lead to poorer outcomes after cancer. This review describes patient-reported outcome measures (PROMs) used to quantify treatment burden after cancer and their psychometric properties. The aim of this review is to understand the prevalence, extent, and factors associated with treatment burden after cancer. A scoping review protocol was registered on the Open Science Framework (https://doi.org/10.17605/OSF.IO/MWG2C). Databases searched for studies which used, developed, or validated PROMs of treatment burden in cancer populations. Studies were synthesised narratively. Twenty-one studies were included. Most studies (n=16, 76.2%) were conducted in the USA. Studies used a range of existing PROMs but there was limited data on the psychometric properties. Studies reported low to moderate levels of treatment burden but mainly sampled White, highly educated, and affluent participants who were employed or retired. Younger age, financial insecurity, chemotherapy, comorbidities, and severe cancer-related symptoms were associated with higher levels of treatment burden. One study found that higher treatment burden was associated with lower quality of life, however, the relationship between treatment burden and other outcomes was not examined. Studies have found low to moderate levels of treatment burden after cancer but are likely to have under-estimated treatment burden due to sampling limitations. Certain demographic characteristics could increase risk of treatment burden. Future research should ensure these characteristics are represented in study populations and should explore the impact of treatment burden on outcomes such as treatment adherence and survival.