OBJECTIVES : This study aimed to quantitatively assess the burden of end-stage kidney disease (ESKD) and time on dialysis from a patient perspective across multiple countries and ESKD stages.

METHODS : Fifty stage 4/5 ESKD patients on dialysis from the US (n=24), UK (n=9), Germany (n=9) and France (n=8) completed the EuroQol five-dimensional questionnaire (EQ-5D-5L) and Kidney Disease Quality of Life Short Form 1.3 (KDQoL-SF). Descriptive statistics examined EQ-5D-5L response, index, EQ-VAS scores (mean [SD]) and KDQoL domain scores (median [SD]). Due to sample size, median values are reported where appropriate. Comparisons between years on dialysis (<1, 1-5, 2-5, 5-10, >10) and ESKD stage (4/5) were made. Results were triangulated to a separate qualitative study (N=37).

RESULTS : Across all countries, EQ-5D-5L response distributions indicate universal problems for mobility, usual activities, pain/discomfort and anxiety/depression in late stage ESKD patients on dialysis. Stage-5 ESKD patients had received dialysis for relatively longer than Stage-4 ESKD patients and response distributions were consistently worse for stage-5 patients. UK patients reported the lowest EQ-VAS score (40.4 [18.3]), while France (0.44 [0.28]) and UK (0.45 [0.25]) provided the lowest index scores. Low KDQoL-SF scores (indicating worse disease state) were observed across all patients for work status, general health, physical and burden of kidney disease/KD. US patients on dialysis >1 year had lower KDQoL scores than <1 year. Across all countries, EQ-VAS and KDQoL-SF scores were consistently worse among patients on dialysis 2-5 years than <2 years; although improved with longer-term dialysis (>5 years).

CONCLUSIONS : The study contributes insights on the universal HRQoL burden of ESKD with dialysis. Utility values conveyed higher burden for UK and France patients. Burden of disease measured by EQ-VAS and KDQoL-SF increased with years of dialysis and greater time since last dialysis. Burden decreased with longer-term dialysis; suggesting acquiescence similar to other long-term chronic diseases.