Impact of chronic kidney disease on adults and their caregivers in the United States: a systematic literature review.

BACKGROUND

The objective of this study was to synthesize estimates of the economic and humanistic burden among adults with chronic kidney disease (CKD) and the economic, humanistic, and clinical impacts among their informal caregivers, in the United States (US).

METHODS

A systematic literature review was conducted using MEDLINE and Embase, to identify studies reporting estimates of (1) economic or humanistic burden among adults with CKD and (2) economic, humanistic, or clinical impacts on their informal caregivers, published between 2016 and 2025. Two reviewers independently performed study selection and data extraction according to PRISMA guidelines. Study population characteristics were summarized, as were estimates of burden; costs were converted to 2025 USD.

RESULTS

Adults with CKD: From 10,191 citations, 55 studies were included. Mean age ranged from 46 to 81 years; 30–73% were female. Out-of-pocket (OOP) expenditures were estimated at $1,619, $2,189 (mean), and $1,913 (median) annually (3 studies). Health-related quality of life (HRQoL) was assessed in 48 studies using a variety of instruments. Substantial HRQoL impacts were consistently demonstrated, reported by adults with CKD; higher CKD stages and presence of diabetes were associated with greater impacts. Caregivers: From 5,909 citations, 7 studies were included. Caregivers were primarily female (64–100%); 24–70% were the care recipient’s spouse/partner; and mean age ranged from 47 to 59 years. Time spent caregiving ranged from 27 to 38 h/week (2 studies) and caregiving duration was approximately 4 years (3 studies). Depression and anxiety were reported in 21–36% and 32–44% of caregivers, respectively (2 studies). Although various instruments were used to measure caregiver burden and HRQoL, studies consistently documented the high impact on caregivers (6 studies).

CONCLUSION

This review demonstrates the considerable burden experienced by adults with CKD and their informal caregivers, and highlights several gaps in characterizing these impacts, particularly for economic burden among adults with CKD, and economic and humanistic burden among caregivers. Further research is needed to better describe and quantify these impacts, as well as evaluate modifiable risk factors that contribute to greater burden.