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Updated: Sep 3, 2026

Digital Home-Monitoring of Patients after Kidney Transplantation: The MACCS Platform
Published on: April 12, 2021
End-of-Life Care Patterns by Transplant Eligibility Among Patients With End Stage Kidney Disease
Annie Liu1, Jennifer F N Kizza-Brown2, Ayman Al Jurdi3
1Department of Supportive Oncology (A.L., S.G, J.L., J.A.T.), Dana Farber Cancer Institute, Boston, Massachusetts, USA; Nephrology Division (A.L., A.A.J., A.M.M., S.S., K.S, S.K., S.G.), Mass General Brigham, Boston, Massachusetts, USA; Harvard Medical School (A.L., A.A.J., A.M.M., S.S., K.S., S.K., S.G., J.L., J.A.T., A.E., N.N.U.), Boston, Massachusetts, USA.
Context:
Adults with end stage kidney disease (ESKD) often spend years awaiting kidney transplantation, during which transplant listing status frequently changes from active to inactive-a phase marked by evolving expectations. The relationship of these changes to healthcare utilization and end-of-life care is poorly characterized.
Objective:
To compare healthcare utilization and end-of-life outcomes by transplant eligibility and transplant listing status (active vs. inactive) changes during the final year of life.
Methods:
We conducted an observational study of 394 adults with ESKD (active, n = 69; inactive, n = 325) who underwent kidney transplant evaluation in a large healthcare system between January 1, 2017 and June 30, 2023, and died without transplantation by June 30, 2024.
Results:
In the last year of life, patients had a median of two emergency department visits (interquartile range [IQR] 1-5), two hospitalizations (IQR 1-4), and 25 cumulative hospital days (IQR 1-51). Overall, 61% died in the hospital and 59% remained full code at death, and 18% were referred to hospice (median stay four days, IQR 1-8). Inactive status was associated with more emergency department visits (median 2 [IQR 1-5] vs. 2 [IQR 0-3]; P = 0.011) and hospitalizations (median 3 [IQR 1-5] vs. 2 [IQR 1-4]; P = 0.032) than active status, without differences in end-of-life outcomes. Periods of inactive status were associated with approximately two-fold higher hospitalization rates and greater time hospitalized than active periods.
Conclusion:
Adults with ESKD on dialysis experience intensive end-of-life care regardless of transplant eligibility. Switches to inactive status may represent a clinical inflection point to address prognostic understanding and transplant expectations.
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