Routinely measuring symptom burden and health-related quality of life in dialysis patients: first results from the Dutch registry of patient-reported outcome measures

Background. The 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.Methods. A 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.Results. In 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.Conclusions. The 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.Clinical epidemiolog

Sirolimus and proteinuria in kidney transplantation

Contains fulltext : 140170.pdf (publisher's version ) (Open Access)19 mei 2015Promotores : Hoitsma, A.J., Wetzels, J.F.M

Reduced Cutaneous Squamous Cell Carcinoma after Conversion to Sirolimus: A 2-Year Prospective Open-Label Multicenter Trial

Nephrolog

Urinary biomarkers after donor nephrectomy

Contains fulltext : 154387.pdf (publisher's version ) (Closed access)As the beginning of living-donor kidney transplantation, physicians have expressed concern about the possibility that unilateral nephrectomy can be harmful to a healthy individual. To investigate whether the elevated intra-abdominal pressure (IAP) during laparoscopic donor nephrectomy causes early damage to the remaining kidney, we evaluated urine biomarkers after laparoscopic donor nephrectomy. We measured albumin and alpha-1-microglobulin (alpha-1-MGB) in urine samples collected during and after open and laparoscopic donor nephrectomy and laparoscopic cholecystectomy and colectomy. Additionally, kidney injury molecule 1 (KIM-1) and neutrophil gelatinase-associated lipocalin (NGAL) were measured in urine samples collected during and after laparoscopic donor nephrectomy and colectomy. The same biomarkers were studied in patients randomly assigned to standard or low IAP during laparoscopic donor nephrectomy. We observed a peak in urinary albumin excretion during all procedures. Urine alpha-1-MGB rose in the postoperative period with a peak on the third postoperative day after donor nephrectomy. Urine alpha-1-MGB did not increase after laparoscopic cholecystectomy and colectomy. After laparoscopic nephrectomy, we observed slight increases in urine KIM-1 during surgery and in urine NGAL at day 2-3 after the procedure. After laparoscopic colectomy, both KIM-1 and NGAL were increased in the postoperative period. There were no differences between the high- and low-pressure procedure. Elevated urinary alpha-1-MGB suggests kidney damage after donor nephrectomy, occurring irrespective of IAP during the laparoscopic procedure