Pace-ckd: health-related quality of life of patients with ckd and caregivers: results froma us survey

Abstract Background and Aims The substantial mortality and morbidity burden of chronic kidney disease (CKD) is well described, with the highest burden associated with progression to end-stage kidney disease (ESKD), where kidney replacement therapy (dialysis or kidney transplantation) is indicated. CKD is known to have a detrimental effect on patient health-related quality of life (HRQoL). However, there is a lack of data comparing the impact of CKD on patient and caregiver HRQoL versus the general population. This study aimed to administer validated HRQoL instruments using a quantitative online survey to estimate the HRQoL of patients with CKD and their caregivers compared to the general population. Method A non-interventional survey enrolled adult patients with CKD and caregivers. Patients with a diagnosis of CKD for at least 3 months were included. ESKD was defined as patients with CKD stage 5 or receiving dialysis or a kidney transplant. Caregivers were required not to receive formal payment and must have cared for a CKD patient for a minimum of 1 hour a week in the previous 4 weeks. A general population cohort was also enrolled, matching key patient and caregiver demographic characteristics (e.g. age, sex, and area of residence). Patient and caregiver HRQoL were assessed using the EQ-5D-5L instrument. Caregiver HRQoL was also measured by the CarerQoL-7D carer-specific instrument. Results This analysis is based on 199 patients with CKD and 113 caregivers in the United States who were enrolled between June and July 2022. Patient and caregiver median age was 58 years and 38 years, respectively. There were 32.2% patients who were on dialysis, while 81.4% caregivers were caring for a patient on dialysis. Most dialysis patients (79.7%) were receiving treatment in a clinic or hospital, with 20.4% of patients receiving it at home. Caregivers typically cared for their parent (45.1%) or partner (25.7%) and their duties would most commonly include driving to/from medical appointments (89.4%). When comparing mean [SD] EQ-5D-5L index scores for patients with CKD with the general population, patients had 33.7% lower utility (0.63 [0.27] vs 0.95 [0.08]) and caregivers had 13.8% lower utility (0.81 [0.22]) vs 0.94 [0.11]) versus the general population. EQ-5D-5L index scores were lower in dialysis-dependent patients (0.59 [0.27]) versus non dialysis-dependent patients (0.65 [0.27]). Patients and caregivers reported problems across all EQ-5D domains (anxiety and depression, mobility, pain/discomfort, selfcare and usual activities) when compared to the general population, with anxiety and depression domains scoring highest. According to the CarerQoL-7D index, caregivers for patients with CKD had worse HRQoL than caregivers for other major illnesses, including hip fractures, breast cancer and dementia, according to published estimates [1–3]. Results for patients and caregivers in other countries (United Kingdom, Germany and Mexico) will also be presented at the congress. Conclusion This survey provides new evidence on the HRQoL burden of CKD, both for patients and their caregivers, compared to the general population. Patients with CKD and caregivers incurred substantial detriment to their HRQoL, which was driven by all EQ-5D-5L domains, particularly anxiety and depression. Evidence based policy interventions should aim to slow CKD progression to reduce the large societal burden to patients and their caregivers. Funding: This study was supported by AstraZeneca.