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BackgroundThe use of patient-reported outcome measures (PROMs) is becoming increasingly important in healthcare. However, incorporation of PROMs into routine nephrological care is challenging. This study describes the first experience with PROMs in Dutch routine dialysis care.MethodsA pilot study was conducted in dialysis patients in 16 centres. Patients were invited to complete PROMs at baseline and 3 and 6 months. PROMs consisted of the 12-item short-form and Dialysis Symptom Index to assess health-related quality of life (HRQoL) and symptom burden. Response rates, HRQoL and symptom burden scores were analysed. Qualitative research methods were used to gain insight into patients’ views on using PROMs in clinical practice.ResultsIn total, 512 patients (36%) completed 908 PROMs (24%) across three time points. Response rates varied from 6 to 70% among centres. Mean scores for physical and mental HRQoL were 35.6 [standard deviation (SD) 10.2] and 47.7 (SD 10.6), respectively. Patients experienced on average 10.8 (SD 6.1) symptoms with a symptom burden score of 30.7 (SD 22.0). Only 1–3% of the variation in PROM scores can be explained by differences between centres. Patients perceived discussing their HRQoL and symptom scores as insightful and valuable. Individual feedback on results was considered crucial.ConclusionsThe first results show low average response rates with high variability among centres. Dialysis patients experienced a high symptom burden and poor HRQoL. Using PROMs at the individual patient level is suitable and may improve patient–professional communication and shared decision making. Further research is needed to investigate how the collection and the use of PROMs can be successfully integrated into routine care to improve healthcare quality and outcomes.

Value-based health care is increasingly promoted as a strategy for improving care quality by benchmarking outcomes that matter to patients relative to the cost of obtaining those outcomes. To support the shift toward value-based health care in chronic kidney disease (CKD), the International Consortium for Health Outcomes Measurement (ICHOM) assembled an international working group of health professionals and patient representatives to develop a standardized minimum set of patient-centered outcomes targeted for clinical use. The considered outcomes and patient- reported outcome measures were generated from systematic literature reviews. Feedback was sought from patients and health professionals. Patients with very high-risk CKD (stages G3a/A3 and G3b/A2- G5, including dialysis, kidney transplantation, and conservative care) were selected as the target population. Using an online modified Delphi process, outcomes important to all patients were selected, such as survival and hospitalization, and to treatment-specific subgroups, such as vascular access survival and kidney allograft survival. Patient-reported outcome measures were included to capture domains of health-related quality of life, which were rated as the most important outcomes by patients. Demographic and clinical variables were identified to be used as case-mix adjusters. Use of these consensus recommendations could enable institutions to monitor, compare, and improve the quality of their CKD care.

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.