Background: Patient experience is an established indicator of quality of care. Validated tools that measure both experiences and priorities are lacking for chronic dialysis care, hampering identification of negative experiences that patients actually rate important.
Methods: We developed two Consumer Quality (CQ) index questionnaires, one for in-centre haemodialysis (CHD) and the other for peritoneal dialysis and home haemodialysis (PHHD) care. The instruments were validated using exploratory factor analyses, reliability analysis of identified scales and assessing the association between reliable scales and global ratings. We investigated opportunities for improvement by combining suboptimal experience with patient priority.
Results: Sixteen dialysis centres participated in our study. The pilot CQ index for CHD care consisted of 71 questions. Based on data of 592 respondents, we identified 42 core experience items in 10 scales with Cronbach's α ranging from 0.38 to 0.88; five were reliable (α ≥ 0.70). The instrument identified information on centres' fire procedures as the aspect of care exhibiting the biggest opportunity for improvement. The pilot CQ index PHHD comprised 56 questions. The response of 248 patients yielded 31 core experience items in nine scales with Cronbach's α ranging between 0.53 and 0.85; six were reliable. Information on kidney transplantation during pre-dialysis showed most room for improvement. However, for both types of care, opportunities for improvement were mostly limited.
Conclusions: The CQ index reliably and validly captures dialysis patient experience. Overall, most care aspects showed limited room for improvement, mainly because patients participating in our study rated their experience to be optimal. To evaluate items with high priority, but with which relatively few patients have experience, more qualitative instruments should be considered.