Quality of life among caregivers of people with end-stage kidney disease managed with dialysis or comprehensive conservative care.

BACKGROUND: To measure health-related and care-related quality of life among informal caregivers of older people with end-stage kidney disease (ESKD), and to determine the association between caregiver quality of life and care recipient's treatment type. METHODS: A prospective cross-sectional study was conducted. Three renal units in the UK and Australia were included. Informal caregivers of people aged ≥75 years with ESKD managed with dialysis or comprehensive conservative non-dialytic care (estimated glomerular filtration (eGFR) ≤10 mL/min/1.73m2) participated. Health-related quality of life (HRQoL) was assessed using Short-Form six dimensions (SF-6D, 0-1 scale) and care-related quality of life was assessed using the Carer Experience Scale (CES, 0-100 scale). Linear regression assessed associations between care-recipient treatment type, caregiver characteristics and the SF-6D utility index and CES scores. RESULTS: Of 63 caregivers, 49 (78%) were from Australia, 26 (41%) cared for an older person managed with dialysis, and 37 (59%) cared for an older person managed with comprehensive conservative care. Overall, 73% were females, and the median age of the entire cohort was 76 years [IQR 68-81]. When adjusted for caregiver sociodemographic characteristics, caregivers reported significantly worse carer experience (CES score 15.73, 95% CI 5.78 to 25.68) for those managing an older person on dialysis compared with conservative care. However, no significant difference observed for carer HRQoL (SF-6D utility index - 0.08, 95% CI - 0.18 to 0.01) for those managing an older person on dialysis compared with conservative care. CONCLUSIONS: Our data suggest informal caregivers of older people on dialysis have significantly worse care-related quality of life (and therefore greater need for support) than those managed with comprehensive conservative care. It is important to consider the impact on caregivers' quality of life when considering treatment choices for their care recipients.

Management Guidelines for Patients Choosing the Renal Supportive Care (RSC) Pathway: Information and Web-based Treatment Protocols Available to All.

Available guidelines fall into 2 categories - medication guides and service provision guides Few guidelines exist for the management of patients choosing to not have dialysis apart from those covering end of life (EOL) management and general ones for the management of chronic kidney disease. Most guidelines are only based on low level evidence, relying on expert opinion or current practice. This limits their usage when advising on matters such as trials of dialysis and caution should be applied when discussing these matters. More data is needed before firmer recommendations can be made. Units in Australia and New Zealand should consider maintaining registers of 'at risk' patients to allow greater input into symptom management and end-of-life support.

Case Vignettes.

Case 1. The Distressed Health Care Provider Mr MF was a 72 yo married father living independently with his wife. Mr MF was admitted electively for non-operative correction of a known left renal artery stenosis. Previous investigations reported two small kidneys with total obstruction of the right renal artery and > 60% obstruction of the left. Recent health was compromised by multiple admissions to Coronary Care (CCU) with chest pain and acute pulmonary edema (APO) despite recent plasty of a blocked coronary graft, placed in 2002. An Interventional Radiologist accessed the left renal artery. Unfortunately the tip of the catheter guide wire snapped off in the proximal part of the vessel, totally occluding it. An Interventional Cardiologist was unable to retrieve the remnant wire via a brachial approach. The entry site at the right brachial artery puncture developed a hematoma. The Vascular Surgeons opined that open revascularisation of the blocked renal artery was not an option.

End-stage kidney disease: a survey of recent research to support a palliative approach.

This survey examines the quantity, quality, and accessibility of recent research that contributes to the evidence-based implementation of a palliative approach to end-stage kidney disease (ESKD). An electronic search identified published articles (between September 2009 and August 2011) relevant to adults with ESKD (n = 1628). Few articles (n = 136) referred to key themes in a palliative approach to care: life-limiting illness, holistic care, and unit of care. Most of the relevant empirical articles used designs that did not allow a causal variable to be identified, and evaluations of interventions were rare. The literature was dispersed and often in journals unlikely to be regularly accessed by renal clinicians. Literature supporting the implementation of a full evidence-based palliative approach to ESKD is expanding but remains limited and is difficult to identify and access.