Symptoms in advanced renal disease: A cross-sectional survey of symptom prevalence in stage 5 chronic kidney disease managed without dialysis

Background: Numbers of patients with stage 5 chronic kidney disease (CKD) managed conservatively (without dialysis) are increasing steadily but prevalence and severity of symptoms in this population are not yet known. Aim: To describe symptom prevalence, symptom severity, and total symptom burden in patients with stage 5 CKD managed conservatively. Method: A cross-sectional survey of patients with stage 5 CKD managed conservatively, in three U. K. renal units. Symptoms were assessed using the patient-completed Memorial Symptom Assessment Scale Short Form (MSAS-SF), with additional renal symptoms. Results: Sixty-six patients were recruited (responserate, 62%), with mean age 82 years (standard deviation [SD]+/- 6.6), and mean estimated glomerular filtration rate 11.2 mL/min (SD +/- 2.8). Symptoms reported by more than one third or 33% of patients were (95% confidence intervals shown in parentheses): lack of energy, 76% (66% - 84%); pruritus, 74% (65% - 82%); drowsiness, 65% (54% - 74%); dyspnea, 61% (50% - 70%); edema, 58% (47% - 66%); pain, 53% (42% - 63%); dry mouth, 50% (39% - 60%); muscle cramps, 50% (39% - 60%); restless legs, 48% (38% - 58%); lack of appetite, 47% (37% - 58%); poor concentration, 44% (34% - 54%); dry skin, 42% (32% - 53%); sleep disturbance, 41% (32% - 51%); and constipation, 35% (26% - 45%). Mean number of symptoms reported on MSAS-SF was 11.58 (SD +/- 5.2), with an additional 2.77 (SD +/- 1.7) renal symptoms. Symptoms were also most severe in the more prevalent symptoms. Pain was an exception, with disproportionately greater severity ( 32% of all patients reported moderate/severe pain). Conclusion: This study demonstrates that patients with stage 5 CKD have considerable symptom control needs, similar to advanced cancer populations, but with different patterns of individual symptoms and severity, particularly pain. Implications for palliative care, hospice, and nephrology services in planning and providing care are discussed.