Establishing Foundations to Develop a Treatment Decision Aid for Patients Hospitalized with Unexpected End-Stage Kidney Disease: A Community Engaged Approach

PROJECT SUMMARY
Chronic kidney disease is a significant public health threat in the U.S. and the ninth leading cause of death. In
2018, more than 15% of U.S. adults had chronic kidney disease and more than 785,000 had advanced to end-
stage kidney disease (ESKD), requiring kidney replacement therapy (KRT) for survival. In 2018, approximately
85% of patients with ESKD received in-center hemodialysis as their primary KRT despite inferiority in terms of
quality-of-life, cost of care, and survival compared to home dialysis modalities or kidney transplant.
Additionally, in 2018, 80.8% of patients with ESKD began KRT with a central venous catheter (the least
preferred dialysis access) and 46.0-74.7% have been reported to start KRT in the inpatient setting. This is
thought to be, in part, due to a lack of KRT education provided to patients with ESKD across all care settings,
impeding their ability to make informed treatment decisions. Moreover, approximately one third of patients who
reach ESKD had no prior planning or nephrology care. Patients with unexpected ESKD suffer from increased
morbidity and mortality, have limited access to kidney transplantation, and are less likely to be informed of
KRTs than patients with planned KRT initiation. Providing KRT education during the KRT initiation
hospitalization for patients with unexpected ESKD, who had no pre-ESKD nephrology care and never saw an
outpatient CKD clinic, closes an important gap in patient education. To date, no-one in the U.S. has developed
a hospital-based education intervention for patients hospitalized for KRT initiation to increase the proportion of
patients opting for home dialysis or kidney transplant. Using a community engaged approach, this proposal will
conduct the formative work required to develop a hospital-based KRT decision-aid targeted to patients who
initiate KRT unplanned and in the hospital. Therefore, this proposal aims to: (1) Conduct a review of the
literature to synthesize existing patient reported information needs for treatment decision-making among
patients with advanced chronic kidney disease; (2) Using a community engaged approach, identify the KRT
information and decision-making needs and assets of patients with and without a history of pre-ESKD
nephrology care hospitalized for KRT initiation; and (3) Identify U.S. locations, specifically within the
Southeastern U.S. (Georgia, North Carolina, South Carolina), that have limited pre-ESKD care and create heat
maps to describe geographic variability in the receipt of pre-ESKD care to identify hospital sites for testing and
implementation of a future intervention. The collected data will directly inform the future development of a
hospital-based KRT decision aid intervention and the resulting decision aid will be validated and tested to
assess its impact on KRT decisions, including uptake of home dialysis modalities and kidney transplant.