Improving care and outcomes for disadvantaged children with chronic kidney disease

Abstract

Children with chronic kidney disease (CKD) can experience debilitating symptoms and impaired quality of life with a substantial burden of treatment that include dialysis, surgical interventions, and adherence to strict diet regimens. Inequities such as socioeconomic disparities and geographical disadvantages are associated with reduced access to care and poorer health outcomes in children with CKD. This thesis uses mixed methods to generate new knowledge on the trajectory of quality of life (QoL) and the effect of a patient navigator program on self-rated health and other outcomes in children with CKD. Chapter 2 includes longitudinal surveys that were conducted to assess the trajectories of QoL in children with CKD over time. Chapter 3 discusses qualitative research methods and its application in nephrology, and how to ensure rigor in conducting qualitative research. The methods outlined in this chapter, are applied in chapters 4, 5 and 6, where I aimed to evaluate the effectiveness of a patient navigator intervention in children with CKD (The NAVKIDS2 Trial). Chapter 4 describes the baseline characteristics of NAVKIDS2: a multi-centre, mixed methods, randomised controlled trial of patient navigators in children with CKD conducted in Australia. Chapter 5 comprises a semi-structured interview study with caregivers of the children enrolled in the NAVKIDS2 conducted prior to the commencement of the intervention and elicited their perspectives on accessing healthcare. Chapter 6 describes the NAVKIDS2 patient navigation intervention in children with CKD. Whilst the patient navigator program was not shown to effect Self-Rated Health of children with CKD, the benefits included enhanced care partnerships and alleviation of caregiver stress that reinforced the caregiver's ability to deliver care. This thesis highlights the need for providing improved care coordination to build caregiver efficacy through improved access to care for better outcomes in children with CKD.