A Descriptive Analysis of an Ambulatory Kidney Palliative Care Program

Abstract

Background: Many patients with serious kidney disease have an elevated symptom burden, high mortality, and poor quality of life. Palliative care has the potential to address these problems, yet nephrology patients frequently lack access to this specialty. Objectives: We describe patient demographics and clinical activities of the first 13 months of an ambulatory kidney palliative care (KPC) program that is integrated within a nephrology practice. Design/Measurements: Utilizing chart abstractions, we characterize the clinic population served, clinical service utilization, visit activities, and symptom burden as assessed using the Integrated Palliative Care Outcome Scale-Renal (IPOS-R), and patient satisfaction. Results: Among the 55 patients served, mean patient age was 72.0 years (standard deviation [SD] = 16.7), 95% had chronic kidney disease stage IV or V, and 46% had a Charlson Comorbidity Index >8. The mean IPOS-R score at initial visit was 16 (range = 0-60; SD = 9.1), with a mean of 7.5 (SD = 3.7) individual physical symptoms (range = 0-15) per patient. Eighty-seven percent of initial visits included an advance care planning conversation, 55.4% included a medication change for symptoms, and 35.5% included a dialysis decision-making conversation. Overall, 96% of patients who returned satisfaction surveys were satisfied with the care they received and viewed the KPC program positively. Conclusions: A model of care that integrates palliative care with nephrology care in the ambulatory setting serves high-risk patients with serious kidney disease. This KPC program can potentially meet documented gaps in care while achieving patient satisfaction. Early findings from this program evaluation indicate opportunities for enhanced patient-centered palliative nephrology care.

Keywords: ambulatory palliative care; kidney disease; nephrology; palliative care; symptom burden.

FIG. 1.

Symptom prevalence at initial visit (n = 49). *n = 18 for depression, n = 47 for anxiety question, RLS, Restless Legs Syndrome.

FIG. 2.

Visit activities by treatment choice. Age: mean years (SD); CCI: mean (SD); KPS: % (SD); GFR: mL/minute/1.73 m², mean (SD). CCI, Charlson comorbidity index; GFR, glomerular filtration rate; KPS, Karnofsky Performance Status; SD, standard deviation.