Time to Rethink Our Approach to Patient-Reported Outcome Measures for ESRD

Finkelstein, Fredric O.; Finkelstein, Susan H.

doi:10.2215/cjn.04850517

Cited by 34 publications

(37 citation statements)

References 15 publications

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“…9 For example, some patients on home hemodialysis have reported a willingness to trade months of survival for ability to travel. 10 With the increasing recognition of the importance of patient preferences and satisfaction for shared decision-making and assessing outcomes, 8,9,[11][12][13][14][15][16][17] it has become clear that a more multifaceted approach is needed for evaluating dialysis as a treatment modality. 18 In January 2018, KDIGO (Kidney Disease: Improving Global Outcomes) convened a Controversies Conference titled "Dialysis Initiation, Modality Choice, Access, and Prescription."…”

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confidence: 99%

Dialysis initiation, modality choice, access, and prescription: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

Chan

Blankestijn

Dember

et al. 2019

Kidney International

279

235

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Globally, the number of patients undergoing maintenance dialysis is increasing, yet throughout the world there is significant variability in the practice of initiating dialysis. Factors such as availability of resources, reasons for starting dialysis, timing of dialysis initiation, patient education and preparedness, dialysis modality and access, as well as varied "country-specific" factors significantly affect patient experiences and outcomes. As the burden of end-stage kidney disease (ESKD) has increased globally, there has also been a growing recognition of the importance of patient involvement in determining the goals of care and decisions regarding treatment. In January 2018, KDIGO (Kidney Disease: Improving Global Outcomes) convened a Controversies Conference focused on dialysis initiation, including modality choice, access, and prescription. Here we present a summary of the conference discussions, including identified knowledge gaps, areas of controversy, and priorities for research. A major novel theme represented during the conference was the need to move away from a "one-size-fits-all" approach to dialysis and provide more individualized care that incorporates patient goals and preferences while still maintaining best practices for quality and safety. Identifying and including patient-centered goals that can be validated as quality indicators in the context of diverse health care systems to achieve equity of outcomes will require alignment of goals and incentives between patients, providers, regulators, and payers that will vary across health care jurisdictions.

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confidence: 99%

Dialysis initiation, modality choice, access, and prescription: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

Chan

Blankestijn

Dember

et al. 2019

Kidney International

279

235

View full text Add to dashboard Cite

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“…Moreover, as patients wish to discuss individual outcomes and PROM results to guide their treatment, which was explicitly expressed by the patient representatives in our working group, new practice patterns would need to be developed to do so. 73,74 For these reasons, we consider the standard set as a goal rather than a threshold.…”

Section: Discussionmentioning

confidence: 99%

Development of an International Standard Set of Value-Based Outcome Measures for Patients With Chronic Kidney Disease: A Report of the International Consortium for Health Outcomes Measurement (ICHOM) CKD Working Group

Verberne

Das-Gupta²,

Allegretti

et al. 2019

American Journal of Kidney Diseases

107

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Value-based health care is increasingly promoted as a strategy for improving care quality by benchmarking outcomes that matter to patients relative to the cost of obtaining those outcomes. To support the shift toward value-based health care in chronic kidney disease (CKD), the International Consortium for Health Outcomes Measurement (ICHOM) assembled an international working group of health professionals and patient representatives to develop a standardized minimum set of patientcentered outcomes targeted for clinical use. The considered outcomes and patient-reported outcome measures were generated from systematic literature reviews. Feedback was sought from patients and health professionals. Patients with very high-risk CKD (stages G3a/A3 and G3b/A2-G5, including dialysis, kidney transplantation, and conservative care) were selected as the target population. Using an online modified Delphi process, outcomes important to all patients were selected, such as survival and hospitalization, and to treatment-specific subgroups, such as vascular access survival and kidney allograft survival. Patient-reported outcome measures were included to capture domains of health-related quality of life, which were rated as the most important outcomes by patients. Demographic and clinical variables were identified to be used as case-mix adjusters. Use of these consensus recommendations could enable institutions to monitor, compare, and improve the quality of their CKD care.

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“…To consider the cumulative nature of cardiovascular and inflammatory dysfunctions over time in ESRD, we postulated hypothetical drivers of longer DRT and constructed longitudinal models considering modifiable variables to improve DRT (2,16,20). In that sense, this study focused on solute clearance and IDH as important modifiable factors.…”

Section: Discussionmentioning

confidence: 99%

“…The healthcare paradigm has begun to shift towards patient centered care, including adoption of various patient reported outcomes (PROs) in the routine clinical assessment in individuals with end stage kidney disease (ESKD), who often suffer a burden resulting not only from their kidney disease and comorbidities, but from the dialysis treatment itself (1)(2)(3). Capturing patients' experiences related to routine dialysis care is an important step towards a more patient focused disease management (4).…”

Section: Introductionmentioning

confidence: 99%

Impacts of Dialysis Adequacy and Intradialytic Hypotension on Changes in Dialysis Recovery Time

Guedes

Pécoits-Filho

Leme

et al. 2020

Preprint

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Background: Patient reported long dialysis recovery time (DRT) is common and associated with higher hospitalization and mortality. The goal of our study was to test the hypothesis that hemodialysis (HD) dose and intradialytic hypotension (IDH) rates are associated with dialysis recovery time (DRT). Methods: We analyzed data from adult HD patients who responded to DRT survey ≤180 days from first date of dialysis (FDD) during 2014 to 2017. DRT survey was administered with annual KDQOL survey. DRT survey asks: “How long does it take you to be able to return to your normal activities after your dialysis treatment?” Answers are: <0.5, 0.5-to-1, 1-to-2, 2-to-4, or >4 hours. An adjusted logistic regression model computed odds ratio for increased/maintained longer DRT (increase above DRT >2 hours) in reference to decreased/maintained shorter DRT (decrease below DRT <2 hours, or from DRT >4 hours). Changes in DRT were calculated from incident (≤180 days FDD) to first prevalent (>365-to-≤545 days FDD) and second prevalent (>730-to-≤910 days FDD) years. Results: Among 98616 incident HD patients (age 62.6±14.4 years, 57.8% male) who responded to DRT survey, a higher spKt/V in the incident period was associated with 13.5% (OR=0.865; 95%CI 0.801-to-0.935) lower risk of longer DRT in the first-prevalent year. A higher number of HD treatments with IDH episodes/month in the incident period was associated with a 0.8% (OR=1.008; 95%CI 1.001-to-1.015) and 1.6% (OR=1.016; 95%CI 1.006-to-1.027) higher probability of a longer DRT in the first- and second-prevalent years, respectively. Consistently, an increased in incidence of IDH episodes/months was associated to longer DRT over time. Conclusions: Incident patients who had higher spKt/V and less sessions with IDH episodes had a lower likelihood of longer DRT in first year of HD. Dose optimization strategies with cardiac stability in fluid removal should be tested.

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Time to Rethink Our Approach to Patient-Reported Outcome Measures for ESRD

Cited by 34 publications

References 15 publications

Dialysis initiation, modality choice, access, and prescription: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

Dialysis initiation, modality choice, access, and prescription: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

Development of an International Standard Set of Value-Based Outcome Measures for Patients With Chronic Kidney Disease: A Report of the International Consortium for Health Outcomes Measurement (ICHOM) CKD Working Group

Impacts of Dialysis Adequacy and Intradialytic Hypotension on Changes in Dialysis Recovery Time

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