The Role of Patient Capacity in Chronic Kidney Disease Trajectories

PROJECT SUMMARY/ABSTRACT
Several forms of renal replacement therapy (RRT) exist to help patients with ESKD, but they are not equally
desirable, with in-home dialysis and kidney transplantation being generally preferable to in-center hemodialysis.
The best evidence available indicates that, compared to in-center dialysis, pre-emptive kidney transplantation
and at-home dialysis modalities are associated with better quality of life, same or better survival, and are more
cost-effective. Noting these benefits, the U.S. Department of Health and Human Services launched the
Advancing American Kidney Health initiative in 2019. This program proposed a target of having 80% of ESKD
patients on home dialysis or receiving a preemptive transplant by 2025. Yet, according to the U.S. Renal Data
System, only 14% of patients diagnosed with ESKD in 2018 utilized a home dialysis modality or received
preemptive transplant, despite the fact that the majority of patients are both medically and psychosocially eligible
for these options.
In part, this may be due to the work that RRT requires of patients to implement new healthcare “workload” into
their lives. In the case of home dialysis, patients must shoulder these new tasks without the help of healthcare
professionals traditionally found at in-center dialysis facilities. In the case of transplant, patients are often
surprised by the lack of a return to “normal life” due challenges with immunosuppression, finances, and
relationships that follow transplant. When treatment workload exceeds patient capacity, defined as patients’
abilities and resources to access and use healthcare services and enact self-care at home, patients are at risk
for poorer outcomes. These outcomes are in part driven by unsustainable treatment burden, defined as the
objective treatment work asked of patients and the subjective negative social and emotional consequences.
Treatment burden is correlated with patient non-adherence and has been found to affect as many as 40% of all
patients with chronic conditions. There is considerable evidence that patient capacity is a modifiable construct
and relevant to CKD care. It is created through patient interaction with their biography (sense of self and life
roles), resources, environment, experience of patient work, and social network.
In the proposed study we will determine if patient capacity, among CKD patients who progress to kidney failure,
correlates with the choice of RRT (Aim 1). We will also determine amongst ESKD patients on RRT whether
higher capacity predicts the switch to a more desirable form of RRT and lower capacity predicts the switch to a
less desirable form of RRT or withdrawing from RRT (Aim 2). Finally, this study will determine amongst
CKD/ESKD patients medically eligible for transplant if patient capacity is prognostic for transplant referral,
transplant approval, or death on the transplant wait list (Aim 3).

Grant Number: 5K01DK133643-03
NIH Institute/Center: NIH
Principal Investigator: Kasey Boehmer