Palliative Care Costs in Different Ambulatory-Based Settings: A Systematic Review

Background Cost-of-illness studies in palliative care are of growing interest in health economics. There is no standard methodology to capture direct and non-direct healthcare and non-healthcare expenses incurred by health services, patients and their caregivers in the course of the ambulatory palliative care process. Objective We aimed to describe the type of healthcare and non-healthcare expenses incurred by patients with cancer and non-cancer patients and their caregivers for palliative care in ambulatory-based settings and the methodology used to capture the data. Methods We conducted a systematic review of studies on the costs of ambulatory-based palliative care in patients with cancer (breast, lung, colorectal) and non-cancer conditions (chronic heart failure, chronic obstructive pulmonary disease, dementia) found in six bibliographic databases (PubMed, EMBASE [via Ovid], Cochrane Database of Systematic Reviews, EconLit, the National Institute for Health Research Health Technology Assessment Database and the National Health Service Economic Evaluation Database at the University of York, and Google Scholar). The studies were published between January 2000 and December 2022. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) methodology for study selection and assessed study quality using the Quality of Health Economic Studies instrument. The study was registered in PROSPERO (CRD42021250086). Results Of 1434 identified references, 43 articles met the inclusion criteria. The primary data source was databases. More than half of the articles presented data from public healthcare systems (65.12%) were retrospective (60.47%), and entailed a bottom-up costing analysis (93.2%) made from a healthcare system perspective (53.49%). The sociodemographic characteristics of patients and families/caregivers were similar across the studies. Cost outcomes reports were heterogeneous; almost all of the studies collected data on direct healthcare costs (97.67%). The main driver of costs was inpatient care (55.81%), which increased during the end-of-life period. Nine studies (20.97%) recorded costs due to productivity losses for caregivers and three recorded such costs for patients. Caregiving costs were explored through an opportunity cost analysis in all cases, based on interviews conducted with and questionnaires administered to patients and caregivers, mainly via telephone calls (23.23%). Conclusions This systematic review reveals that studies on the costs of ambulatory-based palliative care are increasing. These studies are mostly conducted from a healthcare system perspective, which leaves out costs related to patients’/caregivers’ economic burden. There is a need for prospective studies to assess this financial burden and evaluate, with strong evidence, the interventions and actions designed to improve the quality of life of palliative care patients. Future studies should propose cost calculation approaches using a societal perspective to better estimate the economic burden imposed on patients in ambulatory-based palliative care.