Kidney Disease Quality of Life 36-Item Short Form Survey (KDQOL-36) Normative Values for the United States Dialysis Population and New Single Summary Score

BACKGROUND: The Kidney Disease Quality of Life 36-item short form survey (KDQOL-36) is a widely used, patient-reported outcome measure for patients on dialysis. Efforts to aid interpretation are needed. METHODS: We used a sample of 58,851 dialysis patients participating in the Medical Education Institute (MEI) KDQOL Complete program, and 443,947 patients from the US Renal Data System (USRDS) to develop the KDQOL-36 Summary Score (KSS) for the kidney-targeted KDQOL-36 scales (Burdens of Kidney Disease BKD, Symptoms and Problems of Kidney Disease SPKD, and Effects of Kidney Disease EKD). We also used the MEI and USRDS data to calculate normative values for the Short Form-12 Health Survey's Physical Component Summary (PCS) and Mental Component Summary (MCS), and the KDQOL-36's BKD, SPKD, and EKD scales for the United States dialysis population. We used confirmatory factor analysis (CFA) models for KDQOL-36 kidney-targeted items, evaluated model fit with the comparative fit index (CFI; >0.95 indicates good fit) and root-mean-squared error of approximation (RMSEA; <0.06 indicates good fit), and estimated norms by matching the joint distribution of patient characteristics in the MEI sample to those of the USRDS sample. RESULTS: =0.91). Mean dialysis normative scores were PCS=37.8 and MCS=50.9 (scored on a T-score metric); and KSS=73.0, BKD=52.8, SPKD=79.0, and EKD=74.1 (0-100 possible scores). CONCLUSIONS: The KSS is a reliable summary of the KDQOL-36. The United States KDQOL-36 normative facilitate interpretation and incorporation of patient-related outcome measures into kidney disease care.