Evaluation and Measurement Properties of a Patient-Reported Experience Measure for Home Dialysis

Background No previously validated patient-reported experience measures exist for use among patients undergoing home dialysis. We tested the Home Dialysis Care Experience survey, a newly developed 26-item experience measure, among patients from 30 dialysis facilities in the United States. Methods Using mail and telephone survey modalities, we approached 1372 patients treated with peritoneal dialysis or home hemodialysis for participation. Using the results from completed surveys, we evaluated item calibration by assessing item floor and ceiling effects. We tested three sets of composite scores and used factor analysis to assess model fit for each. We evaluated associations of composite scores with global ratings and separately with patient and dialysis facility characteristics. Finally, we measured test-retest reliability in patients who completed the survey at two separate time points. Results Overall, 495 eligible patients completed at least one survey (response rate 36%). Of these, 49 completed the survey in Spanish and 61 completed a second survey within 30 days. We did not detect significant floor or ceiling effects, except for one item that demonstrated >90% responses at the top response option. Analyses supported one 12-item composite scale with high internal consistency reliability: Quality of Home Dialysis Care and Operations (Cronbach alpha=0.85). This scale strongly correlated with overall staff rating (r=0.73) and overall center rating (r=0.70). Patient demographic and dialysis facility characteristics were not consistently associated with composite scale scores or overall staff or center ratings. Intraclass correlation coefficients in the test-retest population were 0.74 for the Quality scale, 0.88 for overall staff rating, and 0.90 for overall center rating. Conclusions The Home Dialysis Care Experience survey is a 26-item measure that includes one composite scale and two global rating scores and is an informative tool to evaluate patient experience of care for home dialysis.