OBJECTIVES: To explore the type, magnitude and distribution of out-of-pocket (OOP) expenditures and lost earnings for breast cancer patients in the UK over time using data from the Persephone randomised controlled trial (RCT).

METHODS: We examined data from 4088 breast cancer patients in the UK who participated in the "Persephone RCT". OOP expenditures and lost earnings data were analysed over four periods: 6 months, 12 months, 18 months, and 24 months from randomisation. Two-part regression models were applied to examine the relationship between OOP expenditures/lost earnings and health-related quality of life (HRQoL) over time.

RESULTS: The main drivers for OOP expenditures were work-related costs and travel/accommodation costs. In total 927 (23%) of the 4088 patients reported OOP expenditures, with a mean of £409 (SD: £1066; median: £100). In total, 1170 (29%) of the 4088 patients reported lost earnings, with a mean of £2722 (SD: £3228; median: £1600). Moreover, the distribution of OOP expenditures and lost income were highly right skewed.

Over time, the mean of lost earnings increases from £2350 (SD: £2660; median: £1500) at 6 months to £5093 (SD: £5268; median: £3500) at 24 months. Additionally, individuals with poorer health are more likely to have lost income, and also have lost more income. However, there is no statistically significant relationship over time between HRQoL and OOP, in terms of either likelihood of incurring OPP or magnitude of OOP expenditures.

CONCLUSIONS: The study revealed that a cancer diagnosis resulted in heterogeneous impacts on both OOP expenditures and lost earnings. Moreover, despite a publicly funded healthcare system in the UK, OOP expenditures can be considerable for some breast cancer patients.