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, Wouter R; Das-Gupta, Zofia; Allegretti, Andrew S.; Bart, Hans; Biesen, Wim Van; García-García, Guillermo; Gibbons, Elizabeth; Parra, Eduardo; Hemmelder, Marc H; Jager, Kitty J.; Ketteler, Markus; Roberts, Charlotte; Rohani, Muhamed Al; Salt, Matthew; Stopper, Andrea; Terkivatan, Türkan; Tuttle, Katherine R.; Yang, Chih Wei; Wheeler, David C.; Bos, Willem Jan W.

doi:10.1053/j.ajkd.2018.10.007

Cited by 106 publications

(96 citation statements)

References 66 publications

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“…In transplant, the importance of global information sharing has been identified by the World Health Organization as a means of achieving national self‐sufficiency in organ donation and transplant . Although numerous consortiums define international standards in various fields, there are few relevant worldwide metrics in organ donation and transplant. International transplant activity comparisons are typically limited to basic statistics such as “deceased donor transplants per million population”; however, such rudimentary metrics do not take into account intercountry differences such as variations in national demographics, which are likely to affect clinical transplant practice.…”

Section: Introductionmentioning

confidence: 99%

An international comparison of deceased donor kidney utilization: What can the United States and the United Kingdom learn from each other?

Ibrahim

Vece²,

Mehew

et al. 2020

American Journal of Transplantation

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In transplant, meaningful international comparisons in organ utilization are needed. This collaborative study between the United Kingdom (UK) and the United States (US) aimed to develop a kidney utilization metric allowing for legitimate intercountry comparisons.Data from the UK and US transplant registries, including all deceased donor kidneys recovered from 2006 to 2017, were analyzed. To identify a potentially comparable kidney utilization rate (UR), several denominators were assessed. We discovered that the proportion of transplanted kidneys from elderly donors in the UK (10.7%) was 18 times greater than that in the US (0.6%). Conversely, en bloc pediatric kidney transplant was more common in the US. Donation after circulatory death utilization has risen in both countries but is twice as prevalent in the UK (39% of transplants) vs the US (20%). In addition, US and UK URs are not directly comparable due to fundamental system differences. However, using a suite of URs revealed practice areas likely to yield the most benefit if improved, such as efforts to increase kidney offer acceptance in the US and to reduce postacceptance discard in the UK. Methods used in this study, including novel intracountry risk-adjusted UR trend logistic regression analyses, can be translated to other international transplant registries in pursuit of further global learning opportunities. K E Y W O R D S clinical research/practice, donors and donation: deceased, donors and donation: donation after brain death (DBD), donors and donation: donation after circulatory death (DCD), kidney transplantation/nephrology, United Network for Organ Sharing (UNOS) S U PP O RTI N G I N FO R M ATI O N Additional supporting information may be found online in the Supporting Information section.

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Section: Introductionmentioning

confidence: 99%

An international comparison of deceased donor kidney utilization: What can the United States and the United Kingdom learn from each other?

Ibrahim

Vece²,

Mehew

et al. 2020

American Journal of Transplantation

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“…Another problem was that definitions used often varied between institutions or countries, hindering comparisons. Therefore, the development and collection of standard outcome sets have gained ground 58,[63][64][65][66][67].…”

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confidence: 99%

The use of PROMs and shared decision‐making in medical encounters with patients: An opportunity to deliver value‐based health care to patients

Damman

Jani

Jong

et al. 2019

Evaluation Clinical Practice

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Background The recent emphasis on value‐based health care (VBHC) is thought to provide new opportunities for shared decision‐making (SDM) in the Netherlands, especially when using patient‐reported outcome measures (PROMs) in routine medical encounters. It is still largely unclear about how PROMs could be linked to SDM and what we expect from clinicians in this respect. Aim To describe approaches and lessons learned in the fields of SDM and VBHC implementation that converge in using PROMs in medical encounters. Approach Based on input from three Dutch forerunner case examples and available evidence about SDM and VBHC, we describe barriers and facilitators regarding the use of PROMs and SDM in the medical encounter. Barriers and facilitators were structured according to a conversational model that included monitoring and managing, team talk, option talk, choice talk, and decision talk. Key lessons learned and recommendations were synthesized. Results The use of individual, N = 1 PROMs scores in the medical encounter has been largely achieved in the forerunner projects. Conversation on monitoring and managing is relatively well implemented, and option talk to some extent, unlike team talk, and decision talk. Aggregated PROMs information describing outcomes of treatment options seemed to be scarcely used. Experienced barriers largely corresponded to what is known from the literature, eg, perceived lack of time and lack of tools summarizing the options. Some concerns were identified about increasing health care consumption as a result of using PROMs and SDM in the medical encounter. Conclusion Successful implementation of SDM within VBHC initiatives may not be self‐evident, even though individual, N = 1 PROMs scores are being used in the medical encounter. Education and staff resources on meso and macro levels may facilitate the more time‐consuming SDM aspects. It seems fruitful to especially target team talk and choice talk in redesigning clinical pathways.

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“…Furthermore, patients participated in the study while receiving their routine post‐transplant care at our institution, demonstrating the potential feasibility and acceptability of using the ESAS‐r in a real‐world setting. Moreover, symptoms addressed in the ESAS‐r include symptoms that have been reported to be of top priority of patients with ESKD such as pain, fatigue, and depression .…”

Section: Discussionmentioning

confidence: 99%

“…A revised version of the ESAS (ESAS‐r) provides brief symptom descriptions in addition to listing each item . The instrument was originally developed for use in palliative care and has since been validated in patients on dialysis, and includes symptoms that have been identified as relevant for patients with ESKD . The ESAS‐r has been incorporated into Cancer Care Ontario’s “Your Symptoms Matter” survey, a set of PROMs used regularly to monitor symptom burden in patients with cancer .…”

Section: Introductionmentioning

confidence: 99%

Evaluating symptom burden in kidney transplant recipients: validation of the revised Edmonton Symptom Assessment System for kidney transplant recipients – a single‐center, cross‐sectional study

et al. 2020

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Summary We assessed the validity of the Edmonton Symptom Assessment System (ESAS‐r) in kidney transplant recipients (KTR). A cross‐sectional sample of 252 KTR was recruited. Individual ESAS‐r symptom scores and symptom domain scores were evaluated. Internal consistency, convergent validity, and construct validity were assessed with Cronbach’s α, Spearman’s rank correlations, and a priori‐defined risk group comparisons. Mean (SD) age was 51 (16), 58% were male, and 58% Caucasian. ESAS‐r Physical, Emotional, and Global Symptom Scores demonstrated good internal consistency (α > 0.8 for all). ESAS‐r Physical and Global Symptom Scores strongly correlated with PHQ‐9 scores (0.72, 95% CI: 0.64–0.78 and 0.74, 95% CI: 0.67–0.80). For a priori‐defined risk groups, individual ESAS‐r symptom score differed between groups with lower versus higher eGFR [pain: 1 (0–3) vs. 0 (0–2), delta = 0.18; tiredness: 3 (1–5) vs. 1.5 (0–4), delta = 0.21] and lower versus higher hemoglobin [tiredness: 3 (1–6) vs. 2 (0–4), delta = 0.27]. ESAS‐r Global and Physical Symptom Scores differed between groups with lower versus higher hemoglobin [13 (6–29) vs. 6.5 (0–18.5), delta = 0.3, and 9 (2–19) vs. 4 (0–13), delta = 0.24] and lower versus higher eGFR [11 (4–20) vs. 6.5 (2–13), delta = 0.21, and 7 (2–16) vs. 3 (0–9), delta = 0.26]. These data support reliability and construct validity of ESAS‐r in KTR. Future studies should explore its clinical utility for symptom assessment among KTR.

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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

Cited by 106 publications

References 66 publications

An international comparison of deceased donor kidney utilization: What can the United States and the United Kingdom learn from each other?

An international comparison of deceased donor kidney utilization: What can the United States and the United Kingdom learn from each other?

The use of PROMs and shared decision‐making in medical encounters with patients: An opportunity to deliver value‐based health care to patients

Evaluating symptom burden in kidney transplant recipients: validation of the revised Edmonton Symptom Assessment System for kidney transplant recipients – a single‐center, cross‐sectional study

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