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Routinely measuring symptom burden and health-related quality of life in dialysis patients
- Source :
- CLINICAL KIDNEY JOURNAL, 14(6), 1535-1544. OXFORD UNIV PRESS, Clinical kidney journal, 14(6), 1535-1544. Oxford University Press, van der Willik, E M, Hemmelder, M H, Bart, H A J, van Ittersum, F J, Hoogendijk-van den Akker, J M, Bos, W J W, Dekker, F W & Meuleman, Y 2021, ' 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, vol. 14, no. 6, pp. 1535-1544 . https://doi.org/10.1093/ckj/sfz192, Clinical Kidney Journal
- Publication Year :
- 2021
-
Abstract
- 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.
- Subjects :
- medicine.medical_specialty
symptom burden
medicine.medical_treatment
030232 urology & nephrology
Prom
03 medical and health sciences
0302 clinical medicine
Quality of life (healthcare)
Health care
Medicine
030212 general & internal medicine
AcademicSubjects/MED00340
Dialysis
patient-reported outcome measures
Transplantation
business.industry
Symptom burden
Original Articles
female genital diseases and pregnancy complications
health-related quality of life
Nephrology
Physical therapy
dialysis
Patient-reported outcome
Hemodialysis
business
chronic kidney disease
Qualitative research
Subjects
Details
- Language :
- English
- ISSN :
- 20488505
- Volume :
- 14
- Issue :
- 6
- Database :
- OpenAIRE
- Journal :
- Clinical kidney journal
- Accession number :
- edsair.doi.dedup.....347652a9f99baa3a2761dcc6113d099a