Exploring the relationships between patient characteristics and their dialysis care experience.

BACKGROUND: Previous studies have shown that it is possible for patient experience to be influenced by factors that are not attributable to health-care. Therefore, if patient experience is to be used as an accurate indicator of clinical performance, then it is important to understand its determinants. METHODS: We used data from 840 dialysis patients who completed a validated patient experience survey. We created a potential theoretical framework based on available clinical knowledge to hypothesize the relationships between 13 demographic, socio-economic and health status factors and three outcome measures: global rating of the dialysis centre and the patient experience with the nephrologist's and nurses' care. The theoretical framework guided the selection of confounding variables for each determinant, which were then entered as terms in multivariable linear regression models. RESULTS: Patients who were of older age, of non-European decent, and who had a lower educational level, lower albumin level, with better self-rated health and who were without co-morbidities reported higher global ratings with the dialysis centre than their counterparts. Past myocardial infarction and better self-rated health were found to be determinants of a more positive experience while in the nephrologist's care. A more positive experience with nurses' care was associated with factors including older age, Dutch origin background, lower educational level, lower albumin levels and better self-rated health. CONCLUSIONS: Several characteristics of dialysis patients influence the way they rate and experience their care. When using the patient experience and ratings as indicators of clinical performance, they should be adjusted for such factors as identified in our study. This will facilitate a meaningful comparison of dialysis centres, and enable informed decision making by patients, insurers and policy makers.

Development and validation of the Consumer Quality index instrument to measure the experience and priority of chronic dialysis patients.

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.