PERSON-CENTERED KIDNEY CARE AND TRANSITION TO DIALYSIS: AN INVESTIGATION FROM SAUDI ARABIA

Abstract

This dissertation examines Person-Centered Care (PCC) in patients with Advanced chronic kidney disease (CKD) on dialysis in Saudi Arabia. It aims to advance PCC research and inform practical applications through five main objectives: (a) characterize Patient-Reported Outcomes (PROs) in CKD; (b) describe patient engagement among adult non-dialysis CKD patients; (c) identify population characteristics, including emotional and informational support, associated with patient engagement; (d) examine the relationship between patient engagement and health-related outcomes; and (e) characterize patient experiences during the transition to dialysis and identify factors that facilitate unplanned dialysis initiation. Chapter 2 findings of a scoping review of studies conducted in Saudi Arabia, which identified literature gaps, particularly in the standardized measurement of PROs, non-individual or environmental factors relate to patient-reported outcomes, and the underrepresentation of non-dialysis CKD patients in research. Chapter 3 reports the findings of a cross-sectional study of 128 patients which found that most participants scored the lowest engagement level. Key predictors of low engagement were low education level, low emotional and informational support. Chapter 4 reports findings from a qualitative study exploring the reasons that patients often initiate dialysis under emergency or unplanned circumstances. Through in-depth interviews with 18 patients who experienced unplanned dialysis initiation, findings characterize a range of individual, social, and healthcare system factors that contributed to unplanned dialysis initiation. The findings from this dissertation identifies actionable strategies to enhance person-centered and value-based care. The studies collectively highlight the urgent need for improved pre-dialysis care, including earlier nephrology care, integration of multidisciplinary teams, and proactive engagement of patients. Future research should prioritize designing and evaluating structured pre-dialysis programs that promote timely planning and smooth transitions to dialysis, incorporating elements such as patient education, self-management support, and activation strategies. At the policy and practice level, embedding routine PRO measurement, strengthening patient-provider communication, and tailoring care to patients’ social and emotional needs are essential to optimizing CKD care and aligning it with Saudi Arabia’s Vision 2030 healthcare transformation.