Tracking patients with advanced kidney disease in the last 12 months of life

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Bonner, A
Chambers, S
Healy, H
Hoy, W
Mitchell, G
Kark, A
Ratanjee, S
Yates, P
Griffith University Author(s)
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2018
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Abstract

Background: There is increasing recognition of the clinical need for timely and coordinated supportive and palliative care for those with terminal organ failure. Objective: To describe symptoms, quality of life and supportive care needs in the anticipated 12-month period prior to death in adults with chronic kidney disease (CKD) stages 4 or 5. Method: An observational, prospective, longitudinal design was used to follow 19 patients. The measures used were the Chronic Kidney Disease-Symptom Burden Index (CKD-SBI), the Australian Karnofsky Performance Scale (AKPS), the Functional Assessment of Chronic illness Therapy Palliative-14 (FACIT PAL-14), the Assessment of Quality of Life 6 Dimensions (AQoL-6D) and the Sheffield Profile for Assessment and Referral for Care (SPARC). Data were collected at study entry and three monthly until death or study end. Results: Patients’ median age was 78 years (range 42–90), most were male (63%), 10 were receiving dialysis and seven died during the study. The most prevalent symptoms reported differed from those that were most troublesome. The median AKPS score did not change over time (60). Quality of life remained steady over time [FACIT-PAL median range: 43.5-46; AQoL-6D means range: 0.66 (SD 0.19) to 0.75 (SD 0.2)]. Supportive care needs were few. Conclusion: We found a substantial symptom burden and slow functional decline in this group of patients. Regular assessment of both symptoms and QOL is warranted particularly if clinical experience indicates that the person is likely to be in their last year of life. Integrated supportive care programmes could assist with easing symptom burden during this time.

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Journal of Renal Care

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44

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2

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© 2018 European Dialysis and Transplant Nurses Association/European Renal Care Association. This is the peer reviewed version of the following article: Tracking patients with advanced kidney disease in the last 12 months of life, Journal of Renal Care, 2018, 44 (2), pp. 115-122, which has been published in final form at https://doi.org/10.1111/jorc.12239. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving (http://olabout.wiley.com/WileyCDA/Section/id-828039.html)

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Subject

Clinical sciences

Nursing

Health services and systems

Public health

Chronic kidney disease

End-of-life

Outcome mapping

Supportive care

Symptom experience

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Bonner, A; Chambers, S; Healy, H; Hoy, W; Mitchell, G; Kark, A; Ratanjee, S; Yates, P, Tracking patients with advanced kidney disease in the last 12 months of life, Journal of Renal Care, 2018, 44 (2), pp. 115-122

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