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Trajectories of Illness in Stage 5 Chronic Kidney Disease: A Longitudinal Study of Patient Symptoms and Concerns in the Last Year of Life

Lookup NU author(s): Professor Neil SheerinORCiD


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Background and objectives The illness trajectory in the last year of life in advanced (stage 5) chronic kidney disease is poorly understood. Mapping the trajectory of patient-centered outcomes could facilitate better care. The objectives of this study were to determine trajectories of symptoms and wider health-related concerns in the last year of life in stage 5 chronic kidney disease, managed without dialysis. Design, setting, participants, & measurements A longitudinal symptom survey in three UK renal units was used, using the Memorial Symptom Assessment Scale-Short Form and core Palliative Care Outcome Scale. Average (using mean scores over time) and individual (using individual scores over time, with visual graphical analysis) trajectories were mapped. Results Seventy-four patients (mean age, 81 +/- 6.8 years) were recruited; 49 died during follow-up. Average trajectories showed moderate symptom distress and health-related concerns, with marked increase in the last 2 months of life. Visual graphical analysis enabled stable, increasing, or fluctuant individual trajectories to be identified. The proportion following these trajectories varied between outcome measures; regarding symptoms, 50% followed a stable pattern, 24% increased, and 21% fluctuated compared with 26%, 57%, and 21%, respectively, for health-related concerns. Inter-rater agreement in grouping trajectories was high (kappa statistic, 0.80 and 0.86, respectively). Conclusions In the 2 months before death, patients reported a sharp increase in symptom distress and health-related concerns. Health care should anticipate and address this increase, which may indicate the patients is approaching death. Considerable individual variation and flexibility/responsiveness of care is important: one size of service does not fit all. Clin J Am Soc Nephrol 6: 1580-1590, 2011. doi: 10.2215/CJN.09021010

Publication metadata

Author(s): Murtagh FEM, Sheerin NS, Addington-Hall J, Higginson IJ

Publication type: Article

Publication status: Published

Journal: Clinical Journal of the American Society of Nephrology

Year: 2011

Volume: 6

Issue: 7

Pages: 1580-1590

Print publication date: 01/07/2011

ISSN (print): 1555-9041

ISSN (electronic): 2155-2592

Publisher: American Society of Nephrology


DOI: 10.2215/CJN.09021010


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