Patient-reported outcome measures (PROMs) of treatment burden in long-term conditions: a scoping review

Abstract Background Treatment burden is the workload of healthcare and self-management and the impact of this workload on patient functioning and wellbeing. Treatment burden can lead to poorer outcomes in people with long-term conditions. The aims of this review are to identify and describe existing treatment burden patient-reported outcome measures (PROMs), explore their psychometric properties, and to compare frequency and predictors of treatment burden and associations with health outcomes. Methods Five databases were searched for studies which used, developed, or validated PROMs of treatment burden in long-term conditions. Studies were synthesised quantitively and narratively. Results Two-hundred and four studies were included. The largest proportion ( n = 64, 31.4%) were conducted in the USA and focused on long-term conditions in general or multimorbidity ( n = 72, 35.3%). We identified 53 validated PROMs and 22 ad hoc measures, but only 10 PROMs explicitly or comprehensively assessed treatment burden. The level of treatment burden varied across studies but was moderate across most long-term conditions, with several studies reporting a high level of treatment burden. Treatment burden was higher in those with more long-term conditions, of younger age, with poor mental health and lower social support. Higher treatment burden was also associated with lower quality of life. Conclusions This review comprehensively mapped treatment burden PROMs, their psychometric properties, and summarised key considerations for researchers and policy makers who may wish to measure and address treatment burden. Younger adults with multimorbidity and lower levels of social support are particularly at risk of treatment burden and lower quality of life. Interventions could be targeted to those at highest risk.