Caring for and caring about in economic evaluation: modelling the family and caregiving effects

Current methods for modelling spillover effects on carers in economic evaluation include four main methods: (absolute) utilities, disutilities, increments and multipliers. Each of these approaches assumes that the spillover effect is one-dimensional. We aimed to develop a new approach that better reflects the complexity of caring and the nuances of how a new treatment may impact the caregiver. We propose a new method based on the established concepts of the ‘family effect’ (or caring about someone) and the ‘caregiving effect’ (providing care for someone). These effects can be disentangled through analysis of carer-patient dyads or using patient and carer (dis)utilities and estimates from the literature. We consider case studies in Duchenne Muscular Dystrophy, Spinal Muscular Atrophy and Alzheimer’s Disease. Our approach models a small carer health-related quality of life (HRQoL) gain for each intervention, whereas the utility approach consistently models a substantial carer HRQoL gain, and the disutility approach models a carer HRQoL loss in two case studies. Our method allows explicit consideration of the benefits to carers of extending patient survival or improving patient health, with the negative HRQoL impact of increased caregiving burden. We propose that our method can be used with published data at present, and further research should analyse the family and caregiving effects in different conditions.