Economic cost of informal cancer caregiving at the end of life: systematic search and narrative synthesis.

BACKGROUND

Informal caregivers are essential to the provision of cancer care at the end of life, yet the economic costs they bear remain poorly understood and are neither routinely captured nor used in economic evaluation. The absence of consistent data collection and agreed methods for valuation risks underestimating these costs in both policy and practice.

AIM: To synthesise the current evidence on the costs borne by informal caregivers for individuals with cancer who have accessed palliative care or are at the end of life and to highlight methodological considerations in measuring these costs.

DESIGN

A systematic search and narrative synthesis.

DATA SOURCES: MEDLINE, CINAHL, PsycINFO and Cochrane databases were searched for relevant studies published in English between 2013 and 2023.

RESULTS

The analysis included 18 studies. Costs to caregivers were categorised into direct costs (eg, out-of-pocket expenses), indirect costs (eg, employment impact) and time costs associated with caregiving tasks. Carer costs varied by cancer stream, functional status and phase of illness. Significant inequities were evident, with carers who were female, rurally located or from socioeconomically disadvantaged groups experiencing higher burdens. There was no standard methodology for measurement of caregiving costs. Heterogeneity in study design, populations and valuation methodologies limited direct comparison of cost estimates across settings.

CONCLUSIONS

Informal caregiving imposes significant and unevenly distributed costs. There is a need for an economic tool to standardise how these costs are measured. This would promote integration of carer cost into economic evaluations and would inform policies that support equity and sustainability in cancer care.