Objectives For many people with advanced kidney disease, their physical, psychological and emotional needs remain unmet. Kidney supportive care, fully integrating specialist kidney and palliative care teams, responds to the emotional and symptom distress in this cohort who may be on a non-dialysis care pathway or on dialysis and approaching end of life. We aimed to analyse and describe the operation and patient characteristics of a new kidney supportive care programme (KSCp).
Methods A multidisciplinary KSCp was introduced through a tertiary hospital in Brisbane, Australia. Operational information and characteristics of referred patients were collected from internal databases and electronic medical records and analysed descriptively. Patient data were collected using validated instruments to assess symptom burden, health-related quality of life, health state, functional status and performance at clinic entry and analysed descriptively.
Results 129 people with advanced kidney disease were referred to the KSCp within the first year (median age 74 (range 27.7–90.5), 48.1% female, median Charlson Comorbidity Index score 7 (IQR 6–8) and mean Integrated Palliative care Outcome Scale Renal score 19.6±9.8). 59% were currently receiving dialysis. The leading reason for referral was symptom management (37%). While quality of life and health state varied considerably among the cohort, in general, these parameters were well below population norms.
Conclusions Results indicate that patients referred to the KSCp were those with a strong need for a patient-centred, integrated model of care. Shifting focus to co-ordinated, multidisciplinary care rather than discrete specialty silos appears key to addressing the challenging clinical problems in end-of-life care.
- chronic kidney disease
- supportive care
- model of care
- patient-reported outcome measures
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HH and AB contributed equally.
Contributors HH, AB, CD and IB designed the study/clinical programme. IB and BT collected data. LP and PMS analysed data. AB, HH, LP and PMS interpreted results. LP, AB and HH wrote the manuscript. All authors reviewed the manuscript.
Funding This work was supported by: Metro North Hospital & Health Service SEED Grant; Australian Centre for Health Services Innovation (AusHSI) Implementation Grant (#IG000754); NHMRC Chronic Kidney Disease Centre of Research Excellence.
Competing interests None declared.
Patient consent Not required.
Ethics approval Approval from the Human Research Ethics Committee of the Royal Brisbane and Women’s Hospital was granted (reference no. HREC/16/QRBW/208). In lieu of individual consent, approval to use clinical data for research purposes was granted under the Public Health Act 2005 by the Queensland Department of Health (reference no. RD006421).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Requests for access to data should be addressed to the corresponding author.