Viking Settlers in the Isle of Man: Simulation Experiments

Background: Volume overload and depletion both lead to high morbidity and mortality. Achieving euvolemia is a challenge in patients with end stage kidney disease on hemodialysis (HD). Blood volume analysis (BVA) uses radiolabeled albumin to determine intravascular blood volume (BV). The measured BV is compared to an ideal BV (validated in healthy controls). We hypothesized that BVA could be used in HD to evaluate the adequacy of the current clinically prescribed “estimated dry weight” (EDW) and to titrate EDW in order to improve overall volume status. We were also interested in the reproducibility of BVA results in end stage kidney disease. Methods: Twelve adults on chronic HD were recruited; 10 completed the study. BVA (Daxor, New York, NY, USA) was used to measure BV at baseline. EDW was kept the same if the patient was deemed to be euvolemic by BVA otherwise, the prescribed EDW was changed with the aim that measured BV would match ideal BV. A second BVA measurement was done 1–3 months later in order to measure BV again. Results: Based on BVA, 6/10 patients were euvolemic at baseline and 5/10 were euvolemic at the second measurement. When comparing patients who had their prescribed EDW changed after the initial BVA to those who did not, both groups had similar differences between measured and ideal BV (P = 0.75). BV values were unchanged at the second measurement (P = 0.34) and there was no linear correlation between BV change and weight change (r2 = 0.08). Conclusions: This pilot study is the first longitudinal measurement of BVA in HD patients. It revealed that changing weight did not proportionally change intravascular BV. BV remained stable for 1–3 months. BVA may not be helpful in clinically stable HD patients but studies on patients with hemodynamic instability and uncertain volume status are needed. Trial Registration: ClinicalTrials.gov (NCT02717533), first registered February 4, 2015

A Descriptive Analysis of an Ambulatory Kidney Palliative Care Program

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 \u3e8. 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

The longitudinal relationship between patient-reported outcomes and clinical characteristics among patients with focal segmental glomerulosclerosis in the Nephrotic Syndrome Study Network

Abstract Background Understanding the relationship between clinical and patient-reported outcomes (PROs) will help support clinical care and future clinical trial design of novel therapies for focal segmental glomerulosclerosis (FSGS). Methods FSGS patients ≥8 years of age enrolled in the Nephrotic Syndrome Study Network completed Patient-Reported Outcomes Measurement Information System PRO measures of health-related quality of life (HRQoL) (children: global health, mobility, fatigue, pain interference, depression, anxiety, stress and peer relationships; adults: physical functioning, fatigue, pain interference, sleep impairment, mental health, depression, anxiety and social satisfaction) at baseline and during longitudinal follow-up for a maximum of 5 years. Linear mixed-effects models were used to determine which demographic, clinical and laboratory features were associated with PROs for each of the eight children and eight adults studied. Results There were 45 children and 114 adult FSGS patients enrolled that had at least one PRO assessment and 519 patient visits. Multivariable analyses among children found that edema was associated with global health (−7.6 points, P = 0.02) and mobility (−4.2, P = 0.02), the number of reported symptoms was associated with worse depression (−2.7 per symptom, P = 0.009) and anxiety (−2.3, P = 0.02) and the number of emergency room (ER) visits in the prior 6 months was associated with worse mobility (−2.8 per visit, P < 0.001) and fatigue (−2.4, P = 0.03). Multivariable analyses among adults found the number of reported symptoms was associated with worse function in all eight PROMIS measures and the number of ER visits was associated with worse fatigue, pain interference, sleep impairment, depression, anxiety and social satisfaction. Laboratory markers of disease severity (i.e. proteinuria, estimated glomerular filtration rate and serum albumin) did not predict PRO in multivariable analyses, with the single exception of complete remission and better pain interference scores among children (+9.3, P = 0.03). Conclusions PROs provide important information about HRQoL for persons with FSGS that is not captured solely by the examination of laboratory-based markers of disease. However, it is critical that instruments capture the patient experience and FSGS clinical trials may benefit from a disease-specific instrument more sensitive to within-patient changes