Patient-centered burdens and economic outcomes among patients who are veterans, people with intellectual and developmental disabilities, and people living in rural areas and their caregivers

Abstract

Background: This review synthesized literature on patient-centered burdens and economic outcomes (PCBEOs) for three populations that may be underrepresented in the literature—military veterans, people with intellectual and developmental disabilities (IDD), and individuals living in rural areas—to better understand how PCBEOs are captured for these populations. Methods: We searched PubMed, CINAHL, EconLit, Web of Science, and APA PsycInfo (January 2015–April 2025) for U.S.-based studies of PCBEOs due to medical reasons for veterans, people with IDD, or people living in rural areas or their caregivers. We categorized PCBEOs into direct medical costs, direct non-medical costs, indirect impacts, and intangible burdens. We examined population-specific rationales for studying these outcomes reported in the studies. Results: Of 1,549 identified records, 126 met inclusion criteria. Intangible burdens were the most frequently reported PCBEOs (n = 84, 67%), while direct medical (n = 47, 37%) and non-medical costs (n = 28, 22%) were least commonly assessed. Patterns in PCBEOs varied across populations: studies of veterans focused narrowly on intangible burdens (n = 23, 85% of veteran studies), specifically composite measures of caregiver burden (n = 17 studies, 63% of veteran studies on intangible burdens). Studies on people with IDD and rural populations more often examined multiple PCBEO categories, including indirect impacts (IDD n = 33, 58%; rural n = 22, 47%) such as unpaid caregiving time; direct medical costs (IDD n = 25, 44%; rural n = 19, 40%) such as out-of-pocket medical expenses, and direct non-medical costs (IDD n = 14, 25%; rural n = 14, 30%) such as travel costs. Across all groups, few studies assessed the full spectrum of PCBEOs. Most studies (n = 96, 76%) provided research justifications tailored to their study population, though this varied across groups—about half of veteran studies (n = 13, 48%) included justifications, compared with 84% (n = 48) for IDD and 70% (n = 33) for rural populations. Conclusion: The frequent reporting of intangible burdens across all populations highlights substantial emotional and psychological strains faced by these groups. Considerable variability in PCBEOs examined across populations reveals gaps in comprehensive assessment of the full range of PCBEOs that each group experienced. These findings underscore the need for systematic data collection to more fully capture the range of burdens for these populations.