Routinely measuring symptom burden and health-related quality of life in dialysis patients: First results from the Dutch registry of patient-reported outcome measures
Clinical Kidney Journal Feb 07, 2020
van der Willik EM, Hemmelder MH, Bart HAJ, et al. - Researchers report the first experience with patient-reported outcome measures (PROMs) in Dutch routine dialysis care, given the inclusion of PROMs into routine nephrological care is challenging. In a pilot study done in 16 centres, PROMs were recorded at baseline and 3 and 6 months. In PROMs, the 12-item short-form and Dialysis Symptom Index to evaluate health-related quality of life (HRQoL) and symptom burden was included. Overall 908 PROMs (24%) were completed by 512 patients (36%) across three time points. Findings revealed low average response rates with high variability among centres. A high symptom burden and poor HRQoL were observed in dialysis patients. The suitability of using PROMs at the individual patient level was suggested, and this possibly results in improved patient–professional communication and shared decision making.
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