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Kidney Week

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Abstract: TH-PO1049

PaCE-CKD: Health-Related Quality of Life of Caregivers of Individuals with CKD: Results from a Multinational Survey

Session Information

Category: CKD (Non-Dialysis)

  • 2302 CKD (Non-Dialysis): Clinical, Outcomes, and Trials


  • Correa-Rotter, Ricardo, National Institute of Medical Sciences and Nutrition Salvador Zubiran, Mexico City, Mexico
  • Hull, Richard, St George's University Hospitals NHS Foundation Trust, London, United Kingdom
  • Elsayed, Hesham Mohamed, Ain Shams University Faculty of Medicine, Cairo, Egypt
  • Rangaswami, Janani, The George Washington University School of Medicine and Health Sciences, Washington, District of Columbia, United States
  • Esposito, Ciro, Universita degli Studi di Pavia, Pavia, Lombardia, Italy
  • Wu, Mai-Szu, Taipei Medical University, Taipei, Taiwan
  • Reichel, Helmut, Nephrologisches Zentrum Villingen Schwenningen, Villingen-Schwenningen, Baden-Württemberg, Germany
  • Garcia Sanchez, Juan Jose, AstraZeneca PLC, Cambridge, United Kingdom
  • Chadban, Steven J., Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
  • Pentakota, Surendra, AstraZeneca PLC, Cambridge, United Kingdom
  • West, Bronwyn, CaPPRe: Community and Patient Preference Research, Sydney, New South Wales, Australia
  • Mellor, Richard, CaPPRe: Community and Patient Preference Research, Sydney, New South Wales, Australia
  • Kularatne, Thames, CaPPRe: Community and Patient Preference Research, Sydney, New South Wales, Australia
  • Fifer, Simon, CaPPRe: Community and Patient Preference Research, Sydney, New South Wales, Australia

Patients with chronic kidney disease (CKD) often rely on informal caregivers such as friends and relatives for support with their condition. The study aim was to measure the multinational impact of CKD on caregiver health-related quality of life (HRQoL) versus the general population.


A non-interventional survey enrolled unpaid caregivers from the UK, US, Mexico and Germany. A cohort representing the general population was also enrolled, matched for key demographics. HRQoL was measured by the EQ-5D-5L instrument which scored health across five domains: mobility, self-care, pain, usual activities, and anxiety/depression. Local tariffs were used to estimate ED-5D index scores. The CarerQol-7D instrument measured the impact of caregiving for patients with CKD and were compared against published estimates in other disease contexts.


Surveys enrolled caregivers from the UK (n=116), US (n=113), Mexico (n=138) and Germany (n=99). Caregivers typically cared for a parent (36.5%) or spouse/partner (30.2%). Most caregivers cared for dialysis dependent patients (UK: 67.2%; US: 81.4%; Mexico: 65.2%; Germany: 64.6%). Support for patients typically comprised of taking medications (86.9%) and transport to/from hospital appointments (85.6%). In all countries, caregivers experienced worse health states and lower mean [SD] EQ-5D-5L scores, with caregivers in Mexico scoring 15% lower than the general population (0.79 [0.18] versus 0.94 [0.07]). Caregivers reported more problems across all EQ-5D-5L domains, most commonly in carrying out usual activities, and experiencing pain, anxiety, and depression. Caregivers in CKD had worse weighted average CarerQoL-7D scores (69.2) across all countries versus caregivers for patients with breast cancer (92.4) and hip fractures (83.7). Results for other countries will be also presented at Kidney Week.


The study explores an aspect of the broader societal burden of CKD, demonstrating a significant impact to caregivers’ HRQoL. Strategies to address the growing burden of CKD should take its indirect effect on caregivers into consideration.


  • Commercial Support – AstraZeneca