Differences in patient-centered burdens and economic outcomes based on sociodemographic characteristics and social determinants of health

Abstract

Background: We conducted a scoping review to examine how patient-centered burdens and economic outcomes (PCBEOs) vary across sociodemographic characteristics and social determinants of health (SDoH) among U.S. patients and their families or caregivers. PCBEOs include financial, emotional, physical, and time-related challenges associated with accessing medical care. We categorized these burdens into four domains: direct medical costs, direct non-medical costs, indirect impacts, and intangible burdens. Methods: We searched PubMed, CINAHL, EconLit, and Web of Science (January 2015–January 2025) for studies focused on adult patients and/or their families or caregivers who reported PCBEOs stratified by sociodemographic characteristics or SDoH. We categorized PCBEOs by domain, catalogued measurement tools and data sources, and summarized proposed strategies to mitigate PCBEOs. Results: From 1,461 records identified, we included 71 studies. Most studies focused on patients (n = 51), with others including caregivers (n = 14) or both groups (n = 6). Cancer was the most frequently studied medical condition (n = 41). Researchers primarily used cross-sectional designs (n = 64), and most relied on secondary analyses of survey data (n = 37). Intangible burdens (n = 55) were the most frequently reported domain, followed by direct medical costs (n = 27), indirect impacts (n = 17), and direct non-medical costs (n = 9). Common subcategories included financial toxicity, delayed or forgone care, and medical financial debt. Younger adults, lower-income households, individuals with less education, and Black or Hispanic populations more frequently reported greater PCBEOs. Fifteen studies proposed strategies to reduce differences in PCBEOs, including cost-related communication, insurance reform, transportation support, financial navigation, and patient-focused interventions. Conclusion: PCBEOs are widespread and unevenly distributed across U.S. populations. Our findings emphasize the need for standardized measurement tools, intersectional research approaches, and direct engagement with patients and caregivers to inform policies and interventions to reduce differences in PCBEOs and support sustainable and accessible care.