Collection of daily patient reported outcomes is feasible and demonstrates differential patient experience in chronic kidney disease

Introduction: Patient reported outcomes (PROs) are a critical metric documenting the impact of disease and treatment from the patient's perspective. A variety of generic and disease specific PRO measures (PROMs) are used in chronic kidney disease (CKD) but studies are primarily cross‐sectional. None of the available PROMs are designed for frequent iterative application. Methods: An online PROM for daily use in dialysis and CKD 4/5 patients was developed. The custom website utilised visual analogue scales to capture 6 PROs (general well being (GWB), pain, sleep, breathing, energy, and appetite). Outcomes of interest were uptake, response rates, intermodality variation, and change in PRO corresponding to predefined events. Findings: Forty‐three patients submitted at least once and 34 submitted beyond 30 days. Median follow‐up was 247 days, 64% male, age 62 ± 12 years. In individuals submitting for >30 days, dialysis patients had significantly worse median scores compared to CKD for sleep (47[32–80], 97[76–99], P = 0.003), appetite (66[50–96], 97[88–100], P = 0.008), energy (47[40–89], 84[67–96], P = 0.031), and GWB (63[49–94], 93[71–98], P = 0.026). Patients demonstrated a variety of stable bandwidths of response, deviations from this were associated with specific events e.g., acute admission, vascular procedures, disturbed fluid status, and dialysis start. Discussion: We successfully introduced an online, patient acceptable, iterative PROM that discriminates symptom burden, cross‐sectionally, and longitudinally. Further work will prospectively examine the predictive power of changes in PRO and more rigorously investigate the potential use of these methods to optimise patient care.