ArticleClinical kidney journal2021
Routinely measuring symptom burden and health-related quality of life in dialysis patients: first results from the Dutch registry of patient-reported outcome measures.
Article in Clinical kidney journal, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 56 papers, 3 of them syntheses that pooled it.
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56 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Pooled it
- Design of a consensus-based geriatric assessment tailored for older chronic kidney disease patients: results of a pragmatic approach.European geriatric medicine · 2021Guideline
- Pooled it
- Feasibility of Symptom monitoring WIth Feedback Trial (SWIFT) for adults on hemodialysis: a registry-based cluster randomized pilot trial.BMC nephrology · 2023Trial
- Multinational stakeholder engagement to inform future development and refinement of the EuroQol toddler and infant populations (EQ-TIPS).The European journal of health economics : HEPAC : health economics in prevention and care · 2026Article
- Psychometric properties of the Chinese version of PROMIS-29 in patients receiving kidney replacement therapy.Zhong nan da xue xue bao. Yi xue ban = Journal of Central South University. Medical sciences · 2026Article
- Patient-reported Outcome Measures in Solid Organ Transplant Recipients: Current use, Challenges, and Recommendations for Future use.Transplantation · 2026Review
- Patient education on PROM completion in clinical care settings: a scoping review.Journal of patient-reported outcomes · 2026Article
- Developing the EuroQol toddler and infant populations (EQ-TIPS) instrument: qualitative analysis of expert views on content validity and conceptual challenges.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Anxiety as a mediator between symptom distress and quality of life in peritoneal dialysis patients: insights from mediation analysis and nonlinear models.Renal failure · 2025Article
- Increased dialysis symptom index burden in maintenance hemodialysis patients during the COVID-19 lockdown period.Annals of medicine · 2025Article
- Concordance of symptoms perceived by patients receiving haemodialysis and those reported by nurses and nephrologists: a cross-sectional, multicentre, observational study using the REIN registry.Clinical kidney journal · 2025Article
- Quality of life experience in physically frail people on renal dialysis: A qualitative meta-synthesis on the difficulties and resources for better health care.International journal of nursing sciences · 2025Review
- Feasibility of implementing a codesigned patient reported outcome measures (PROMs) collection system for older adults in acute and sub-acute hospital settings.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Enhancing Nephrology Research with Natural Language Processing and Artificial Intelligence: A Case for More Comprehensive Symptom Documentation.Kidney360 · 2025Article
- Fatigue across different chronic kidney disease populations: experiences and needs of patients.Clinical kidney journal · 2025Article
- CKD-associated pruritus in haemodialysis: a road map for diagnosis and treatment.Clinical kidney journal · 2025Review
- In-Center Hemodialysis and Patient Travel Time in Aotearoa New Zealand: A Nationwide Geospatial and Data Linkage Study.Kidney international reports · 2025Article
- Designing qualitative research with value in the clinical and epidemiological context: what, why and how.Clinical kidney journal · 2025Article
- First Experiences of Patients and Healthcare Professionals with Routine Use of Patient-Reported Outcome Measures for Venous Thromboembolism.TH open : companion journal to thrombosis and haemostasis · 2025Article
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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.
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