Abstract
BackgroundTo 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.MethodsA 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.ResultsOf 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.ConclusionsOur 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.
Highlights
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
Study design We conducted a multicentre prospective cross-sectional study in two countries of informal caregivers of older people with ESKD treated with dialysis or comprehensive conservative care, between 2014 and 2017
A total of 63 caregivers were enrolled (Additional file figure 1), 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
Summary
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. Older people with end-stage kidney disease (ESKD) managed with dialysis have ageing-related health and social care needs, and a high likelihood of developing frailty syndrome within a few months of starting dialysis [1,2,3,4]. Informal care of older people or those with chronic disease is largely provided by their family members and close friends [5]. With the rapidly growing number of elderly people with ESKD and those with comorbid conditions receiving kidney replacement therapy, the burden on informal caregivers (i.e. close friends or family) to provide care and support has increased [12]
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