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Tracking patients with advanced kidney disease in the last 12 months of life
Author(s) -
Bonner Ann,
Chambers Shirley,
Healy Helen,
Hoy Wendy,
Mitchell Geoff,
Kark Adrian,
Ratanjee Sharad,
Yates Patsy
Publication year - 2018
Publication title -
journal of renal care
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.381
H-Index - 27
eISSN - 1755-6686
pISSN - 1755-6678
DOI - 10.1111/jorc.12239
Subject(s) - medicine , quality of life (healthcare) , referral , observational study , palliative care , kidney disease , dialysis , physical therapy , disease , intensive care medicine , family medicine , nursing
SUMMARY 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.