Abstract Background and Aims Patients with chronic kidney disease (CKD) often rely on informal caregivers for support with their condition, but the effect of these responsibilities on caregivers’ lives is poorly understood. The aim of this study was to quantify the effect of CKD on caregivers’ health states and work productivity across five countries compared with the general population. Method Unpaid informal caregivers of patients with CKD, hereafter referred to as caregivers, in Germany, Mexico, Taiwan, the US, and the UK were enrolled to a non-interventional survey. Caregivers of patients with early (stages 1-3) to advanced (stages 4-5) CKD, including those receiving dialysis were enrolled in the study. A general population cohort was included, matched in sample size and demographic characteristics. The surveys assessed health states and work productivity with the following instruments: Results Across five countries, an average of 112 (range: 94–138) caregivers were enrolled to the study. Most respondents cared for a patient receiving dialysis—in Germany (65%), Mexico (65%), UK (67%), US (81%), though less than half (48%) of respondents in Taiwan cared for a dialysis dependent patient. Frequently reported caregiving duties were help with household duties and driving to medical appointments. Caregivers in Germany, Mexico, the US, and UK experienced significantly impaired health states compared with the general population, as demonstrated by lower EQ-5D-5L utility scores. The greatest difference was observed from respondents in Mexico, with 16% lower mean [SD] index scores compared with the general population (0.79 [0.18] versus 0.94 [0.07]). Caregivers of dialysis dependent patients had similar CarerQol utility scores as those caregiving for non-dialysis dependent patients. Caregivers for dialysis dependent patients reported more problems across all CarerQol domains than caregivers for non-dialysis dependent patients. Caregivers in the UK reported significantly more financial problems (33%) as a result of caregiving; caregivers in the US reported significantly more problems (30%) in combining daily activities with care tasks. Caregiving also had a negative effect on work productivity. Rates of absenteeism, presenteeism, work impairment and non-work activity impairment were worse in caregivers compared with the general population. The largest effects were observed in Mexico where a 40% increase in non-work activity impairment was reported. Conclusion This study highlights the global burden for caregivers of patients with CKD. The broader impact of disease on caregivers should be accounted for when considering interventions relating to CKD.
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