A Pilot Randomized Controlled Trial of Integrated Palliative Care and Nephrology Care

Abstract

Background: There has been a call by both patients and health professionals for the integration of palliative care with nephrology care, yet there is little evidence describing the impact of this approach. The objective of this paper is to report feasibility and acceptability of a pilot randomized controlled trial testing the efficacy of integrated palliative and nephrology care. Methods: English speaking patients with CKD stage V were randomized to monthly palliative care visits for three months in addition to their usual care compared to usual nephrology care. Feasibility of recruitment, retention, completion of intervention processes and feedback on participation was measured. Other outcomes included differences in symptom burden change measured by the Integrated Palliative Outcome Scale (IPOS)-Renal and change in quality of life measured by the Kidney Disease Quality of Life (KDQOL) questionnaire and completion of advance care planning documents. Results: Forty-five (67%) of 67 patients approached provided informed consent. Twenty-seven completed the study (60%), and 14 (74%) of those in the intervention group completed all visits. We found small improvements in overall symptom burden (-2.92 vs.1.57) and physical symptom burden scores (-1.92 vs. 1.79) in the intervention group. We did not see improvements in the quality-of-life scores, with the exception of the physical component score. The intervention group completed more advance care planning documents than controls (five health care proxy forms completed vs. one, nine Medical Orders for Life Sustaining Treatment forms vs. none). Conclusions: We found that pilot testing through a randomized controlled trial of an ambulatory integrated palliative and nephrology care clinical program was feasible and acceptable to participants. This intervention has the potential to improve the disease experience for those with non-dialysis CKD and should be tested in other CKD populations with longer follow-up.

Pathways Project Pragmatic Lessons Learned: Integrating Supportive Care Best Practices into Real-World Kidney Care

“…The need for better access to KSC has been well documented, but efforts to meet the need are nascent. 5 , 41 , 42 Patients with kidney failure have a high symptom burden, a shortened life expectancy, and they experience high intensity care at the end of life compared with patients with other chronic serious illnesses. 43 – 47 Documented barriers to meeting these KSC needs include training gaps, policies with financial disincentives limiting access to both palliative care and hospice, and resistance to integrating palliative care within the nephrology community because of the misconception that it is synonymous with end-of-life care.…”

Shared decision making in elderly patients with kidney failure

“…An RCT investigating the role of individualized ACP coaching demonstrated that coached patients were more likely to have a documented advanced directive compared with the control group [ 112 ]. Another RCT also showed that monthly palliative care visits in addition to usual nephrology care led to improvement in overall and physical symptoms as well as increased adoption of ACP directives [ 113 ]. However, there are barriers to ACP in CKD patients and their families, including timing issues, concerns about patient and family ailments, limited resources and expertise, difficulties in predicting outcomes, and a lack of shared understanding within nephrology departments regarding the integration of ACP [ 114 ].…”