Literature DB >> 30360959

Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop.

Allison Tong1, Braden Manns2, Angela Yee Moon Wang3, Brenda Hemmelgarn2, David C Wheeler4, John Gill5, Peter Tugwell6, Robert Pecoits-Filho7, Sally Crowe8, Tess Harris9, Wim Van Biesen10, Wolfgang C Winkelmayer11, Adeera Levin5, Aliza Thompson12, Vlado Perkovic13, Angela Ju14, Talia Gutman14, Amelie Bernier-Jean14, Andrea K Viecelli15, Emma O'Lone14, Jenny Shen16, Michelle A Josephson17, Yeoungjee Cho15, David W Johnson15, Bénédicte Sautenet18, Marcello Tonelli2, Jonathan C Craig19.   

Abstract

There are an estimated 14,000 randomized trials published in chronic kidney disease. The most frequently reported outcomes are biochemical endpoints, rather than clinical and patient-reported outcomes including cardiovascular disease, mortality, and quality of life. While many trials have focused on optimizing kidney health, the heterogeneity and uncertain relevance of outcomes reported across trials may limit their policy and practice impact. The international Standardized Outcomes in Nephrology (SONG) Initiative was formed to identify core outcomes that are critically important to patients and health professionals, to be reported consistently across trials. We convened a SONG Implementation Workshop to discuss the implementation of core outcomes. Eighty-two patients/caregivers and health professionals participated in plenary and breakout discussions. In this report, we summarize the findings of the workshop in two main themes: socializing the concept of core outcomes, and demonstrating feasibility and usability. We outline implementation strategies and pathways to be established through partnership with stakeholders, which may bolster acceptance and reporting of core outcomes in trials, and encourage their use by end-users such as guideline producers and policymakers to help improve patient-important outcomes.
Copyright © 2018 International Society of Nephrology. All rights reserved.

Entities:  

Keywords:  core outcome sets; implementation; kidney disease; outcomes; patient-centered care; trials

Mesh:

Year:  2018        PMID: 30360959      PMCID: PMC6620755          DOI: 10.1016/j.kint.2018.08.018

Source DB:  PubMed          Journal:  Kidney Int        ISSN: 0085-2538            Impact factor:   10.612


  42 in total

1.  Excerpts from the United States Renal Data System 2007 annual data report.

Authors:  Allan J Collins; Robert Foley; Charles Herzog; Blanche Chavers; David Gilbertson; Areef Ishani; Bertram Kasiske; Jiannong Liu; Lih-Wen Mau; Marshall McBean; Anne Murray; Wendy St Peter; Jay Xue; Qiao Fan; Haifeng Guo; Qi Li; Shuling Li; Suying Li; Yi Peng; Yang Qiu; Tricia Roberts; Melissa Skeans; Jon Snyder; Craig Solid; Changchun Wang; Eric Weinhandl; David Zaun; Rui Zhang; Cheryl Arko; Shu-Cheng Chen; Frederick Dalleska; Frank Daniels; Stephan Dunning; James Ebben; Eric Frazier; Christopher Hanzlik; Roger Johnson; Daniel Sheets; Xinyue Wang; Beth Forrest; Edward Constantini; Susan Everson; Paul Eggers; Lawrence Agodoa
Journal:  Am J Kidney Dis       Date:  2008-01       Impact factor: 8.860

2.  How do people with chronic kidney disease value cancer-related quality of life?

Authors:  Germaine Wong; Kirsten Howard; Jeremy Chapman; Carol Pollock; Steven Chadban; Glenn Salkeld; Allison Tong; Narelle Williams; Angela Webster; Jonathan C Craig
Journal:  Nephrology (Carlton)       Date:  2012-01       Impact factor: 2.506

3.  The impact of outcome reporting bias in randomised controlled trials on a cohort of systematic reviews.

Authors:  Jamie J Kirkham; Kerry M Dwan; Douglas G Altman; Carrol Gamble; Susanna Dodd; Rebecca Smyth; Paula R Williamson
Journal:  BMJ       Date:  2010-02-15

4.  Patient organizations and research on rare diseases.

Authors:  Julie R Ingelfinger; Jeffrey M Drazen
Journal:  N Engl J Med       Date:  2011-03-16       Impact factor: 91.245

5.  SPIRIT 2013 explanation and elaboration: guidance for protocols of clinical trials.

Authors:  An-Wen Chan; Jennifer M Tetzlaff; Peter C Gøtzsche; Douglas G Altman; Howard Mann; Jesse A Berlin; Kay Dickersin; Asbjørn Hróbjartsson; Kenneth F Schulz; Wendy R Parulekar; Karmela Krleza-Jeric; Andreas Laupacis; David Moher
Journal:  BMJ       Date:  2013-01-08

6.  Cardiovascular and noncardiovascular mortality among patients starting dialysis.

Authors:  Dinanda J de Jager; Diana C Grootendorst; Kitty J Jager; Paul C van Dijk; Lonneke M J Tomas; David Ansell; Frederic Collart; Patrik Finne; James G Heaf; Johan De Meester; Jack F M Wetzels; Frits R Rosendaal; Friedo W Dekker
Journal:  JAMA       Date:  2009-10-28       Impact factor: 56.272

7.  Worldwide, mortality risk is high soon after initiation of hemodialysis.

Authors:  Bruce M Robinson; Jinyao Zhang; Hal Morgenstern; Brian D Bradbury; Leslie J Ng; Keith P McCullough; Brenda W Gillespie; Raymond Hakim; Hugh Rayner; Joan Fort; Tadao Akizawa; Francesca Tentori; Ronald L Pisoni
Journal:  Kidney Int       Date:  2013-06-26       Impact factor: 10.612

Review 8.  A systematic review and meta-analysis of utility-based quality of life in chronic kidney disease treatments.

Authors:  Melanie Wyld; Rachael Lisa Morton; Andrew Hayen; Kirsten Howard; Angela Claire Webster
Journal:  PLoS Med       Date:  2012-09-11       Impact factor: 11.069

9.  MOMENT--Management of Otitis Media with Effusion in Cleft Palate: protocol for a systematic review of the literature and identification of a core outcome set using a Delphi survey.

Authors:  Nicola L Harman; Iain A Bruce; Peter Callery; Stephanie Tierney; Mohammad Owaise Sharif; Kevin O'Brien; Paula R Williamson
Journal:  Trials       Date:  2013-03-12       Impact factor: 2.279

Review 10.  Outcome measures in rheumatoid arthritis randomised trials over the last 50 years.

Authors:  Jamie J Kirkham; Maarten Boers; Peter Tugwell; Mike Clarke; Paula R Williamson
Journal:  Trials       Date:  2013-10-09       Impact factor: 2.279

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  31 in total

1.  Standardized Outcomes in Nephrology-Glomerular Disease (SONG-GD): establishing a core outcome set for trials in patients with glomerular disease.

Authors:  Simon A Carter; Liz Lightstone; Daniel Cattran; Arvind Bagga; Sean J Barbour; Jonathan Barratt; John Boletis; Dawn Caster; Rosanna Coppo; Fernando C Fervenza; Jürgen Floege; Michelle Hladunewich; Jonathan J Hogan; A Richard Kitching; Richard Lafayette; Ana Malvar; Jai Radhakrishnan; Brad H Rovin; Hong Zhang; Talia Gutman; Martin Howell; Charlotte Logeman; Jenny I Shen; Armando Teixeira-Pinto; Stephen I Alexander; Yeoungjee Cho; Jonathan C Craig; David Harris; David W Johnson; Peter G Kerr; Jessica Ryan; Andrea K Viecelli; Angela Yee-Moon Wang; Martin Wilkie; Nicole Scholes-Robertson; Allison Tong
Journal:  Kidney Int       Date:  2019-06       Impact factor: 10.612

2.  An international Delphi survey helped develop consensus-based core outcome domains for trials in peritoneal dialysis.

Authors:  Karine E Manera; Allison Tong; Jonathan C Craig; Jenny Shen; Shilpa Jesudason; Yeoungjee Cho; Benedicte Sautenet; Armando Teixeira-Pinto; Martin Howell; Angela Yee-Moon Wang; Edwina A Brown; Gillian Brunier; Jeffrey Perl; Jie Dong; Martin Wilkie; Rajnish Mehrotra; Roberto Pecoits-Filho; Saraladevi Naicker; Tony Dunning; Nicole Scholes-Robertson; David W Johnson
Journal:  Kidney Int       Date:  2019-03-29       Impact factor: 10.612

3.  Pilot Trials in Nephrology: Establishing a BASE for Large-Scale Randomized Trials.

Authors:  Brendon L Neuen; Vlado Perkovic
Journal:  J Am Soc Nephrol       Date:  2019-12-17       Impact factor: 10.121

4.  Secular Trends in Survival Outcomes of Kidney Transplantation for Children: Is the Future Bright Enough?

Authors:  Sandra Amaral
Journal:  Clin J Am Soc Nephrol       Date:  2020-02-19       Impact factor: 8.237

5.  Living Well with Kidney Disease by Patient and Care-Partner Empowerment: Kidney Health for Everyone Everywhere.

Authors:  Kamyar Kalantar-Zadeh; Philip Kam-Tao Li; Ekamol Tantisattamo; Latha Kumaraswami; Vassilios Liakopoulos; Siu-Fai Lui; Ifeoma Ulasi; Sharon Andreoli; Alessandro Balducci; Sophie Dupuis; Tess Harris; Anne Hradsky; Richard Knight; Sajay Kumar; Maggie Ng; Alice Poidevin; Gamal Saadi; Allison Tong
Journal:  Am J Nephrol       Date:  2021-03-04       Impact factor: 3.754

6.  Living Well with Kidney Disease by Patient and Care-Partner Empowerment: Kidney Health for Everyone Everywhere.

Authors:  Kamyar Kalantar-Zadeh; Philip Kam-Tao Li; Ekamol Tantisattamo; Latha Kumaraswami; Vassilios Liakopoulos; Siu-Fai Lui; Ifeoma Ulasi; Sharon Andreoli; Alessandro Balducci; Sophie Dupuis; Tess Harris; Anne Hradsky; Richard Knight; Sajay Kumar; Maggie Ng; Alice Poidevin; Gamal Saadi; Allison Tong
Journal:  Kidney Dis (Basel)       Date:  2021-05-10

Review 7.  Patient-Reported Outcome Measures for Adults With Kidney Disease: Current Measures, Ongoing Initiatives, and Future Opportunities for Incorporation Into Patient-Centered Kidney Care.

Authors:  Devika Nair; F Perry Wilson
Journal:  Am J Kidney Dis       Date:  2019-09-03       Impact factor: 8.860

8.  Integrating Patient Perspectives into Medical Device Regulatory Decision Making to Advance Innovation in Kidney Disease.

Authors:  Michelle E Tarver; Carolyn Neuland
Journal:  Clin J Am Soc Nephrol       Date:  2021-03-03       Impact factor: 8.237

Review 9.  Renal Rehabilitation: Exercise Intervention and Nutritional Support in Dialysis Patients.

Authors:  Junichi Hoshino
Journal:  Nutrients       Date:  2021-04-24       Impact factor: 5.717

10.  Time spent outside of the hospital, CKD progression, and mortality: a prospective cohort study.

Authors:  Lin Zhang; Heng-Lan Wu; Hai-Feng Yu; Jun-Liang Zhou
Journal:  Int Urol Nephrol       Date:  2021-01-01       Impact factor: 2.370

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