期刊
CLINICAL KIDNEY JOURNAL
卷 14, 期 6, 页码 1535-1544出版社
OXFORD UNIV PRESS
DOI: 10.1093/ckj/sfz192
关键词
chronic kidney disease; dialysis; health-related quality of life; patient-reported outcome measures; symptom burden
资金
- Nierstichting Nederland [A1D1P04]
- Patientenfederatie Nederland
- Zorgverzekeraars Nederland
The study describes the first experience with PROMS in Dutch routine dialysis care, showing low average response rates with high variability among centers. Dialysis patients experienced a high symptom burden and poor HRQoL. Using PROMS at the individual patient level may improve patient-professional communication and shared decision making.
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.
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