Presentation (CTI)

OBJECTIVES: Ill health has impacts beyond patients and can significantly affect informal and family caregivers' health-related quality of life. It has been argued that these spillover effects should be incorporated within economic evaluations, particularly in cost-effectiveness analyses, that aim to inform healthcare resource allocation and reimbursement decisions. This systematic review updates and expands upon a previous review by cataloguing caregiver utilities derived from preference-based measures or direct elicitation methods.
METHODS: A comprehensive literature search was conducted across Medline, EconLit, and Embase databases from April 2018 to July 2024. The search strategy replicated and validated the approach of the previous review, focusing on peer-reviewed English-language articles that report utilities for informal caregivers across diverse conditions.
RESULTS: The search identified 96 studies published between April 2018 and July 2024 that met the inclusion criteria. Most studies were conducted in Europe (65%) and focused on neurodegenerative conditions, particularly dementia and Alzheimer's disease (31%). Among studies using multi-attribute utility instruments, the EQ-5D was the most commonly used instrument (76%), with a notable shift towards the EQ-5D-5L. There was also increased use of caregiver-specific instruments like the CarerQoL-7D (22%). A small selection of studies (n=8) were identified that sought to directly elicit utilities relating to health states that may be experienced by informal carers, typically in the context of rare diseases.
CONCLUSIONS: There has been increasing interest and publication of spillover effects research, from an average of 10 publications annually in the most recent years of the previous review to 16 per year in the timespan covered by this review. While Alzheimer’s disease and dementia remain the most studied conditions, there has been a shift in measurement instruments towards EQ-5D-5L (from EQ-5D-3L) and CarerQoL-7D. The underrepresentation of other conditions with significant caregiver burdens indicates a need for broader research to capture spillover effects across a wider spectrum of diseases.