FC005: Pace CKD: Qualitative and Quantitative Insights into the Economic Burden of CKD on Patients and Carers
Authors: Jose Garcia Sanchez Juan , Kularatne Thames , West Bronwyn , Rao Naveen , Wright Jason , Reichel Helmut , Rangaswami Janani , Hull Richard , Fifer Simon 
Published: May 2022

Abstract

BACKGROUND AND AIMS
Chronic kidney disease (CKD) is likely to significantly affect the lives of patients and their carers, including increasing the economic burden. The relationship between CKD progression and these life impacts remains poorly characterized. The patient, carer and economic burden (PaCE) CKD study aims to enhance understanding of patient and carer experiences of CKD, including financial impact.

METHOD
In-depth, semi-structured, qualitative interviews were conducted with 20 patients with CKD and 19 informal carers in Australia, France, Germany, Italy, the UK and the USA. Participants were asked about their experiences with CKD and the associated economic burden.
A quantitative online survey is ongoing, with 150–200 patients and 75–100 carers anticipated to participate per country. A Work Productivity and Activity Impairment (WPAI) questionnaire for patients and caregivers is being used to understand and estimate the financial burden of CKD on patients and caregivers. Patients are also being asked about their disease background, including the stage of CKD and treatment history.

RESULTS
In total, 20 patients and 19 carers participated in the qualitative interviews, with at least 3 patients and 3 carers included from each country.
Eleven patients were male. Most patients were 75 years old or younger (18/20; overall range 30–81 years, overall mean 61.7 years). Patients reported their CKD stages: 3/20 stage 5; 2/20 stage 4–5; 2/20 stage 4; 2/20 stage 3–4; 8/20 stage 3; 1/20 stage 2; and 2/20 unknown. A third of patients underwent dialysis (7/20), including at least one patient from each country. Nine patients were working full- or part-time.
Carers were 30–90 years old (mean 55.1 years), predominantly women (13/19) and were primarily relatives of the patient (8/19 partner, 5/19 daughter/son, 2/19 daughter-/son-in-law). More than half of the carers were employed (13/19 employed, 5/19 unemployed/retired, 1/19 unknown). Carer support varied between 4 and 35 h/week. Support included activities of daily living, visits to the hospital and emotional/psychological support; support was noted as more critical for patients with later-stage CKD.
The degree of financial burden experienced by patients and carers varied between countries, potentially reflecting differences in local healthcare systems; however, the impact of reduced work hours on finances was consistent across all countries. Both patients and carers reported a loss of work hours, and in some cases, participants reported that they had to stop working. Patients who were employed reported lower productivity, and carers reported taking days off work without pay. Expenses related to the cost of managing CKD, including dietary needs, medical aids and hospital transport, further increased the economic burden. The extent of these impacts varied depending on the severity of CKD.
Results from the quantitative survey will be presented at the congress.

CONCLUSION
Responses from qualitative interviews suggest that CKD increases the financial burden for both patients and carers, particularly as the disease progresses. When combined with data from the quantitative survey, these findings will provide important insights into the economic burden of CKD for patients and carers.