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Chronic kidney disease (CKD) can have a profound impact on patients’ lives. However, multinational data on patients’ experiences of living with CKD are scarce. Here, we describe the impact of CKD as reported by patients in the DISCOVER CKD qualitative study.
DISCOVER CKD (NCT04034992) is a multinational, observational, cohort study that aims to generate contemporary real-world evidence on the management of CKD, to provide insights into current gaps in treatment and management of CKD, as well as care pathways. The study adopted a hybrid design, comprising retrospective and prospective cohorts. As part of the prospective cohort, patients were recruited to participate in one-to-one telephone interviews to explore their experience with CKD, including disease journey, interactions with the healthcare system, and their experience with and attitudes towards treatments for their condition. A target of 100 patient interviews was planned across four countries (the USA, Japan, Spain, the UK). The qualitative interviews, conducted by trained interviewers in the local language between January and June 2023, lasted ~60–90 min. Transcribed interviews were translated into English for coding and analysis. Each interview moderator conducted a quality check of the transcripts in the local language against the English translations to ensure transcription and translation quality. Data were coded using qualitative research software (MAXQDA Plus 2022 v22.3.0). The study received research ethics board approval and all patients provided written informed consent.
Of the 105 participants interviewed, 103 participants were included in the final analysis as two interviews were unusable. The characteristics of the interviewed participants are summarized in Table 1. The majority had CKD Stage 3A or 3B. The average time since CKD diagnosis was 9.5 years. In all, 64% of patients reported that CKD impacts their lives, and 34% reported no impacts either because they felt unaffected by their condition or lacked knowledge of it and were unclear about how it could impact their lives. The percentage of participants reporting “no impacts” was highest in the CKD Stage 1 and 2 group (64.3%) and lowest in the CKD Stage 4 and 5 on dialysis group (0%). The most reported impacts were anxiety or depression (37.9%) or ability to sleep (37.9%) (Figure 1). The frequency of the reported impacts seemed to increase with disease severity, with the highest rates generally in the CKD Stage 4 and 5 on dialysis group. In this group, the most common impact was on ability to work. When participants were asked to rate, from 0 to 10, how bothersome the impacts were for them in their daily life, the top 5 rated were financial impacts (9.00; n=4), social functioning (8.80; n=5), sexual functioning (8.57; n=7), ability to work (8.43; n=7), and ability to sleep (8.42; n=12) (Table 2). A limitation of the current analysis is the smaller numbers in some subgroups of patients for which concept saturation may not have been achieved.
Patients indicated significant adverse impacts of CKD. The apparent higher impact reported by patients with severe disease underscores the importance of early CKD diagnosis and therapeutic management, including early mental health support and multidisciplinary support, to slow down disease progression and associated deterioration in quality of life.