This U.S.-based scoping review synthesized evidence from 126 studies regarding patient-centered burdens and economic outcomes due to medical reasons. The scope included veterans, people with intellectual and developmental disabilities, and individuals living in rural areas and their caregivers.
Intangible burdens were the most frequently reported patient-centered burdens and economic outcomes, appearing in 84 studies, representing 67% of the total. In contrast, direct medical costs were least commonly assessed, found in 47 studies (37%), and direct non-medical costs appeared in 28 studies (22%). Among veteran studies focusing on intangible burdens, 17 studies, or 63% of veteran studies on intangible burdens, utilized composite measures of caregiver burden. Studies on people with intellectual and developmental disabilities examining indirect impacts often focused on unpaid caregiving time, reported in 33 studies (58%).
Research justifications provided were tailored to their study population in 96 studies (76%). However, veteran studies with research justifications showed about half included justifications, specifically 13 studies (48%). IDD studies with research justifications had 84% included justifications (48 studies), while rural population studies with research justifications had 70% included justifications (33 studies).
Limitations noted include that across all groups, few studies assessed the full spectrum of patient-centered burdens and economic outcomes. Considerable variability in patient-centered burdens and economic outcomes examined across populations reveals gaps in comprehensive assessment of the full range of burdens each group experienced. These findings underscore the need for systematic data collection to more fully capture the range of burdens for these populations.
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BackgroundThis 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.MethodsWe 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.ResultsOf 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.ConclusionThe 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.