Patient engagement and patient-centred care in the management of advanced chronic kidney disease and chronic kidney failure

PURPOSE: The purpose of this article is to review the current status of patient-centred care (PCC) and patient engagement (PE) in the management of patients with advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD), to identify some of the barriers that exist to the achievement of PCC and PE, and to describe how these barriers can be overcome. SOURCES OF INFORMATION: The review is based on the professional experience of one of the authors (RB) as a Nephrologist and health care consultant, on the MBA thesis of one of the authors (SS) and on a review of pertinent internet-based information and published literature. FINDINGS: Evidence exists that, currently, the care of patients with advanced CKD and ESRD is not fully patient-centred or fully supportive of PE. A number of barriers exist, including: conflict with other priorities; lack of training and fear of change; the unequal balance of power between patients and providers; physician culture and behaviour; the fee-for-service model of physician compensation; slow implementation of electronic health records; and, fear of accountability. These barriers can be overcome by committed leadership and the development of an information-based implementation plan. Established Renal Agencies in Canada appear interested in facilitating this work by collaborating in the development of a toolkit of recommended educational resources and preferred implementation practices for use by ESRD Programs. LIMITATIONS: A limitation of this review is the absence of a substantial pre-existing literature on this topic. IMPLICATIONS: Receiving care that is patient-centred and that promotes PE benefits patients with serious chronic diseases such as advanced CKD and ESRD. Considerable work is required by ESRD Programs to ensure that such care is provided. Canadian Renal Agencies can play an important role by ensuring that ESRD Programs have access to essential educational material and proven implementation approaches and that implementation successes are celebrated. In this area, enabling policies are required, as are clinical research studies focusing on the measurement of outcomes.