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Observational Study
. 2024;55(6):618-628.
doi: 10.1159/000541064. Epub 2024 Aug 22.

The Lived Experience of Patients with Chronic Kidney Disease: Insights From DISCOVER CKD

Carol Pollock  1 , Juan-Jesus Carrero  2 , Eiichiro Kanda  3 , Richard Ofori-Asenso  4 , Ewelina Palmer  5 , Anna Niklasson  6 , Andrew Linder  7 , Helen Woodward  8 , Surendra Pentakota  9 , Juan Jose Garcia Sanchez  10 , Naoki Kashihara  3 , Steven Fishbane  11 , Roberto Pecoits-Filho  12 , David C Wheeler  13
Affiliations
Observational Study

The Lived Experience of Patients with Chronic Kidney Disease: Insights From DISCOVER CKD

Carol Pollock et al. Am J Nephrol. 2024.

Abstract

Introduction: Chronic kidney disease (CKD) can have a profound impact on patients' lives. However, multinational data on patients' lived experience with CKD are scarce.

Methods: Individuals from the prospective cohort of DISCOVER CKD (NCT04034992), an observational cohort study, were recruited to participate in one-to-one telephone interviews to explore their lived experience with CKD. A target of 100 participant interviews was planned across four countries (Japan, Spain, the UK, and the USA). These qualitative interviews, lasting ∼60-90 min, were conducted in the local language by trained interviewers with specific experience in CKD, between January and June 2023. Transcribed interviews were translated into English for coding and analysis. Data were coded using qualitative research software.

Results: Of the 105 participants interviewed, 103 were included in the final analysis. The average time since CKD diagnosis was 9.5 years, and at least half (50.5%) of participants had CKD stage 3A or 3B. CKD diagnosis was an emotional experience, driven by worry (n = 29/103; 28.2%) and shock (n = 26/103; 25.2%), and participants often reported feeling inadequately informed. Additional information was frequently sought, either online or via other healthcare providers. The proportion of participants reporting no impacts of CKD on their lives was highest in those with CKD stage 1 and 2 (64.3%). Conversely, every participant in the CKD stage 5 on dialysis group reported some impact of CKD on their lives. Across all participants, the most reported impacts were anxiety or depression (37.9%) or ability to sleep (37.9%). The frequency of the reported impacts appeared to increase with disease severity, with the highest rates observed in the dialysis group. In that group, the most frequently reported impact was on the ability to work (80.0%).

Conclusion: Findings from this multinational qualitative study suggest that patients may experience symptoms and signs of disease prior to diagnosis; however, these are often nonspecific and may not be directly associated with CKD. Once diagnosed, the burden of CKD can have a diverse, negative impact on various aspects of patients' lives. This highlights the need for early identification of at-risk individuals, and the importance of early CKD diagnosis and management with guideline-directed therapies to either prevent further deterioration of CKD or slow its progression, thus reducing symptom burden and improving quality of life.

Keywords: Chronic kidney disease; DISCOVER CKD; Patient experience; Patient insights; Telephone interview.

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Conflict of interest statement

Carol Pollock reports advisory board membership for AstraZeneca, Boehringer Ingelheim, Eli Lilly and Vifor Pharma; and speaker fees for AstraZeneca, Janssen-Cilag, Novartis, Otsuka, and Vifor Pharma. Juan-Jesus Carrero reports institutional grants from Astellas, AstraZeneca, and Vifor Pharma; speaker fees from AstraZeneca, Abbott, and Nutricia; and consultancy for AstraZeneca and Bayer. Eiichiro Kanda is a consultant for AstraZeneca. Richard Ofori-Aseno, Surendra Pentakota, Juan Jose Garcia Sanchez, Ewelina Palmer, and Anna Niklasson are employees of, and hold or may hold stock in, AstraZeneca. Andrew Linder and Helen Woodward report no conflict of interest. Naoki Kashihara is a consultant for AstraZeneca, Boehringer Ingelheim, and Kyowa Hakko Kirin; and receives honoraria from Kyowa Hakko Kirin and Daiichi Sankyo. Steven Fishbane reports research support and consulting fees from AstraZeneca; and research support from Akebia Inc., MegaPro Biomedical Co., Ltd., Ardelyx, Corvidia Therapeutics, Inc., and Cara Therapeutics. Robert Pecoits-Filho is an employee of Arbor Research Collaborative for Health, which receives global support for the ongoing Dialysis Outcomes and Practice Patterns Study Programs (provided without restriction on publications by a variety of funders; for details see https://www.dopps.org/AboutUs/Support.aspx). Robert Pecoits-Filho also reports research grants from Fresenius Medical Care; nonfinancial support from Akebia, AstraZeneca, Bayer, Boehringer Ingelheim, Novo Nordisk, and FibroGen; personal fees from Travere Therapeutics; and consulting fees from George Clinical outside the submitted work. David C. Wheeler reports personal fees and nonfinancial support from AstraZeneca; and personal fees from Astellas, Bayer, Boehringer Ingelheim, GSK, Janssen, Mundipharma, Napp, Reata Pharmaceuticals, Tricida, and Vifor Fresenius.

Figures

Fig. 1.
Fig. 1.
Current symptoms of CKD according to CKD stage (>10% of participants; N = 103). CKD, chronic kidney disease.
Fig. 2.
Fig. 2.
Impact of CKD on participants lives according to CKD stage (>10% of participants; N = 103). CKD, chronic kidney disease.
See this image and copyright information in PMC

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References

    1. Kovesdy CP. Epidemiology of chronic kidney disease: an update 2022. Kidney Int Suppl. 2011;12(1):7–11. - PMC - PubMed
    1. Foreman KJ, Marquez N, Dolgert A, Fukutaki K, Fullman N, McGaughey M, et al. . Forecasting life expectancy, years of life lost, and all-cause and cause-specific mortality for 250 causes of death: reference and alternative scenarios for 2016-40 for 195 countries and territories. Lancet. 2018;392(10159):2052–90. - PMC - PubMed
    1. Carriazo S, Villalvazo P, Ortiz A. More on the invisibility of chronic kidney disease… and counting. Clin Kidney J. 2022;15(3):388–92. - PMC - PubMed
    1. Cruz MC, Andrade C, Urrutia M, Draibe S, Nogueira-Martins LA, Sesso CC. Quality of life in patients with chronic kidney disease. Clinics. 2011;66(6):991–5. - PMC - PubMed
    1. Brown SA, Tyrer FC, Clarke AL, Lloyd-Davies LH, Stein AG, Tarrant C, et al. . Symptom burden in patients with chronic kidney disease not requiring renal replacement therapy. Clin Kidney J. 2017;10(6):788–96. - PMC - PubMed

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