Patients’ Perspective of the Access to and Quality of Care for Chronic Kidney Disease: Insights From the DISCOVER-CKD Qualitative Study

OBJECTIVES: This study describes patients’ perspective of the barriers to access and quality of care for chronic kidney disease (CKD) from the DISCOVER-CKD qualitative study.

METHODS: DISCOVER CKD (NCT04034992) is a multinational observational study of patients with CKD. Patients were recruited from the USA, UK, Japan, and Spain to participate in one-to-one telephone interviews characterising the clinical management, including barriers to care and experiences of living with CKD. The qualitative interviews, conducted by trained interviewers in the local language between January–June 2023, lasted ~60–90 min each. Transcribed interviews were translated into English for coding and analysis. Data were coded using qualitative research software (MAXQDA Plus 2022 v22.3.0). The study received research ethics board approval and patients provided written informed consent.

RESULTS: 103 participants were included in the analysis. Regarding perceived barriers to care, n=40/90, 44.44% reported no barriers. Of the barriers reported, travel time to healthcare facilities was most frequently reported (n=20/90, 22.22%) followed by difficulties with booking appointments (n=13/90, 14.44%), lack of information (n=10/90, 11.11%) and available time with specialist (n=7/90, 7.78%).

When asked about attributes of CKD care, patients provided positive and negative responses. Among positive attributes of care, patient care (the process of treatment/management) was most frequently mentioned by Spanish patients (n=11/27, 40.74%), communication by US patients (n=9/22, 40.91%), medical expertise by Japanese patients (n=8/24, 33.33%), while efficiency (e.g. ease of booking appointments) was equally appreciated in the UK and US (n=5/12, 41.67).

Among negative attributes of care, consultation waiting lists were most frequently mentioned by Spanish patients (n=7/11, 63.64%), dislike for procedure/treatment by Japanese patients (n=7, 100%) and dislike for care management by the UK and US patients (n=7/22, 31.82%).

CONCLUSIONS: In this multinational study, patients reported diverse barriers and negative attributes of CKD care. Measures to address these barriers could help optimise patient-centered care and improve outcomes.