How do patients experience chronic kidney disease? A mixed-methods study among patients in Sweden

Abstract

Abstract Background Advanced chronic kidney disease (CKD) severely impacts patients’ lives. Nevertheless, little is known about patients’ own experiences of living with CKD in Sweden. The objective of this study was to describe the patient’s perspective on CKD—including diagnosis, treatment journey, and healthcare interactions—and how CKD impacts patients’ health-related quality of life (HRQoL) and work capacity. Subject and methods A mixed-methods approach was used that incorporated (i) a quantitative online survey with study-specific questions and assessments of HRQoL and work impairment among 178 patients with CKD in Sweden, and (ii) 40 qualitative interviews to gain an in-depth understanding of the patient experience. Results HRQoL and work capacity were notably impacted by CKD and deteriorated with advancing disease stage. Patients experienced numerous symptoms long before diagnosis, but still found diagnosis unexpected. Fatigue was the most frequently reported symptom impacting all areas of patients’ lives. In the interviews, patients reported that they worried what their future life would be like, a dread of dialysis and organ transplantation, and how they implemented lifestyle changes to mitigate progression. In primary healthcare, patients struggled to have their symptoms taken seriously. Once referred to kidney specialists, patients were satisfied with healthcare. Patients wished they had been diagnosed sooner in their disease journey. Conclusion These findings highlight an unmet need from the patient’s perspective in primary healthcare, driven primarily by lack of early CKD diagnosis. In Sweden, there is a need for increased education on CKD in primary care, and a need for increased availability of specialized kidney care.