Cultivating a Research-Ready Dialysis Community

Flythe, Jennifer E.; Narendra, Julia H.; Hilliard, Tandrea; Frazier, Karen; Ikeler, Kourtney; Amolegbe, Andrew; Mitchell, Denise; Dorough, Adeline; Lee, Shoou‐Yih Daniel; Ordish, Antoinette; Wilkie, Caroline; Dember, Laura M.

doi:10.1681/asn.2018101059

Cited by 9 publications

(11 citation statements)

References 6 publications

(8 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…on personal relevance and confidentiality) and support (e.g. completing PROMs online) [ 25 ]. Third, communication between stakeholders should be improved, for instance, by supportive resources such as the provision of material to inform patients, individualized reports on PROM scores and updates on centres’ experiences (best practices), response rates and outcomes [ 25 , 48 ].…”

Section: Discussionmentioning

confidence: 99%

“…This frequency was considered suitable by patients [ 23 ] and is expected to be sufficient for centres to become familiar with PROMs. Aiming at optimal incorporation of PROMs in routine care, centres were free to develop the process of inviting and motivating patients that fit their workflow [ 24 , 25 ]. Clinicians could decide not to invite a patient, for example, because of the patient’s work schedule or medical condition.…”

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

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

Willik

Hemmelder

Bart

et al. 2020

Clinical Kidney Journal

View full text Add to dashboard Cite

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.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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

Willik

Hemmelder

Bart

et al. 2020

Clinical Kidney Journal

View full text Add to dashboard Cite

show abstract

“…Missing data and health economic analyses resulting in difficulty informing health decision-making. 13-21…”

Section: Introductionmentioning

confidence: 99%

“…23 Guided by their priorities in every stage of the research process, needed and meaningful clinical trials in hemodialysis can be implemented for successful knowledge translation and uptake in care settings. 15,20,24,25 As many clinical decisions in hemodialysis care are made at the program/unit level (eg, setting the level of calcium in dialysis fluid), rather than from individual clinician-patient discussions, the trials in this initiative use cluster-randomization of entire hemodialysis units to assess the benefits and risks of intervention. With these considerations, pragmatic trials can test the effectiveness of promising interventions in real-world hemodialysis settings and broad patient groups.…”

Section: Introductionmentioning

confidence: 99%

Cultivating Innovative Pragmatic Cluster-Randomized Registry Trials Embedded in Hemodialysis Care: Workshop Proceedings From 2018

Lee¹,

Patel²,

Acedillo

et al. 2019

Can J Kidney Health Dis

View full text Add to dashboard Cite

Hemodialysis is a life-sustaining treatment for persons with kidney failure. However, those on hemodialysis still face a poor quality of life and a short life expectancy. High-quality research evidence from large randomized controlled trials is needed to identify interventions that improve the experiences, outcomes, and health care of persons receiving hemodialysis. With the support of the Canadian Institutes of Health Research and its Strategy for Patient-Oriented Research, the Innovative Clinical Trials in Hemodialysis Centers initiative brought together Canadian and international kidney researchers, patients, health care providers, and health administrators to participate in a workshop held in Toronto, Canada, on June 2 and 3, 2018. The workshop served to increase knowledge and awareness about the conduct of innovative, pragmatic, cluster-randomized registry trials embedded into routine hemodialysis care and provided an opportunity to discuss and build support for new trial ideas. The workshop content included structured presentations, facilitated group discussions, and expert panel feedback. Partnerships and promising trial ideas borne out of the workshop will continue to be developed to support the implementation of future large-scale trials.

show abstract

“…Second, improving treatment options through research, discovery, and innovation requires that the kidney community embodies an "on-study" culture to better support clinical trials. The wave of new trials around novel therapies emphasizes the need for health professionals and dialysis clinics to be prepared to enroll and perform clinical trials (8). Additionally, the Advancing American Kidney Health initiative emphasized the importance of conducting clinical trials and initiating new trials through a partnership between the HHS and the Department of Veterans Affairs.…”

mentioning

confidence: 99%