Literature DB >> 31492487

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

Devika Nair1, F Perry Wilson2.   

Abstract

Tools that measure patients' experiences and perceptions of disease are increasingly being recognized as important components of a multidisciplinary personalized approach to care. These patient-reported outcome measures (PROMs) have the ability to provide clinicians, researchers, and policymakers with valuable insights into patients' symptoms and experiences that are unable to be ascertained by laboratory markers alone. If developed rigorously, studied systematically, and used judiciously, PROMs can effectively incorporate the patient voice into clinical care, clinical trials, and health care policy. PROMs have continued to gain attention and interest within the nephrology community, but key challenges and opportunities for their seamless uptake and integration remain. In this narrative overview, we provide nephrologists with a comprehensive list of existing PROMs developed for adults with kidney disease with information on their gaps and limitations; a rationale to support the continued incorporation of PROMs into nephrology clinical trials, clinical care, and health care policy; and a summary of ongoing initiatives and future opportunities to do so.
Copyright © 2019 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.

Entities:  

Keywords:  Patient-reported outcomes (PROs); chronic kidney disease (CKD); clinical trial endpoints; end-stage kidney disease (ESKD); hemodialysis; patient voice; patient-centered care; patient-reported outcome measures (PROMs); personalized care; psychometrics; qualitative research; review; symptom management; transplantation

Mesh:

Year:  2019        PMID: 31492487      PMCID: PMC6875620          DOI: 10.1053/j.ajkd.2019.05.025

Source DB:  PubMed          Journal:  Am J Kidney Dis        ISSN: 0272-6386            Impact factor:   8.860


  80 in total

1.  Development of subscales from the symptoms/problems and effects of kidney disease scales of the kidney disease quality of life instrument.

Authors:  S Rao; W B Carter; D L Mapes; J D Kallich; C J Kamberg; K L Spritzer; R D Hays
Journal:  Clin Ther       Date:  2000-09       Impact factor: 3.393

2.  Baseline health perceptions, dysphagia, and survival in patients with head and neck cancer.

Authors:  Miriam N Lango; Brian Egleston; Carolyn Fang; Barbara Burtness; Thomas Galloway; Jeffrey Liu; Ranee Mehra; Barbara Ebersole; Kathleen Moran; John A Ridge
Journal:  Cancer       Date:  2013-12-18       Impact factor: 6.860

3.  Patient-stated preferences regarding volume-related risk mitigation strategies for hemodialysis.

Authors:  Jennifer E Flythe; Thomas W Mangione; Steven M Brunelli; Gary C Curhan
Journal:  Clin J Am Soc Nephrol       Date:  2014-06-05       Impact factor: 8.237

4.  Quality of life in end-stage renal disease patients after successful kidney transplantation: development of the ESRD symptom checklist - transplantation module.

Authors:  G H Franke; J Reimer; M Kohnle; P Luetkes; N Maehner; U Heemann
Journal:  Nephron       Date:  1999-09       Impact factor: 2.847

5.  The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study.

Authors:  Lidwine B Mokkink; Caroline B Terwee; Donald L Patrick; Jordi Alonso; Paul W Stratford; Dirk L Knol; Lex M Bouter; Henrica C W de Vet
Journal:  Qual Life Res       Date:  2010-02-19       Impact factor: 4.147

6.  Psychometric evaluation of the Hemodialysis Stressor Scale.

Authors:  S P Murphy; M J Powers; A Jalowiec
Journal:  Nurs Res       Date:  1985 Nov-Dec       Impact factor: 2.381

7.  Effect of Sertraline on Depressive Symptoms in Patients With Chronic Kidney Disease Without Dialysis Dependence: The CAST Randomized Clinical Trial.

Authors:  S Susan Hedayati; L Parker Gregg; Thomas Carmody; Nishank Jain; Marisa Toups; A John Rush; Robert D Toto; Madhukar H Trivedi
Journal:  JAMA       Date:  2017-11-21       Impact factor: 56.272

8.  Guidelines for Inclusion of Patient-Reported Outcomes in Clinical Trial Protocols: The SPIRIT-PRO Extension.

Authors:  Melanie Calvert; Derek Kyte; Rebecca Mercieca-Bebber; Anita Slade; An-Wen Chan; Madeleine T King; Amanda Hunn; Andrew Bottomley; Antoine Regnault; An-Wen Chan; Carolyn Ells; Daniel O'Connor; Dennis Revicki; Donald Patrick; Doug Altman; Ethan Basch; Galina Velikova; Gary Price; Heather Draper; Jane Blazeby; Jane Scott; Joanna Coast; Josephine Norquist; Julia Brown; Kirstie Haywood; Laura Lee Johnson; Lisa Campbell; Lori Frank; Maria von Hildebrand; Michael Brundage; Michael Palmer; Paul Kluetz; Richard Stephens; Robert M Golub; Sandra Mitchell; Trish Groves
Journal:  JAMA       Date:  2018-02-06       Impact factor: 56.272

9.  Development of Focal Segmental Glomerulosclerosis Patient-Reported Outcome Measures: Symptom Diary and Symptom Impact Questionnaire.

Authors:  Susan D Mathias; Susan Vallow; Debbie S Gipson; Kevin S Thorneloe; Dennis Sprecher
Journal:  Am J Kidney Dis       Date:  2017-06-26       Impact factor: 8.860

10.  Framework and guidance for implementing patient-reported outcomes in clinical practice: evidence, challenges and opportunities.

Authors:  Ian Porter; Daniela Gonçalves-Bradley; Ignacio Ricci-Cabello; Chris Gibbons; Jaheeda Gangannagaripalli; Ray Fitzpatrick; Nick Black; Joanne Greenhalgh; Jose M Valderas
Journal:  J Comp Eff Res       Date:  2016-07-18       Impact factor: 1.744

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  15 in total

Review 1.  Measuring Quality in Kidney Care: An Evaluation of Existing Quality Metrics and Approach to Facilitating Improvements in Care Delivery.

Authors:  Mallika L Mendu; Sri Lekha Tummalapalli; Krista L Lentine; Kevin F Erickson; Susie Q Lew; Frank Liu; Edward Gould; Michael Somers; Pranav S Garimella; Terrence O'Neil; David L White; Rachel Meyer; Scott D Bieber; Daniel E Weiner
Journal:  J Am Soc Nephrol       Date:  2020-02-13       Impact factor: 10.121

Review 2.  Epidemiology of end-stage kidney disease.

Authors:  Ryan Gupta; Karen Woo; Jeniann A Yi
Journal:  Semin Vasc Surg       Date:  2021-02-04       Impact factor: 1.000

3.  Quality of Life before and after the Start of Dialysis in Older Patients.

Authors:  Esther N M de Rooij; Yvette Meuleman; Johan W de Fijter; Saskia Le Cessie; Kitty J Jager; Nicholas C Chesnaye; Marie Evans; Agneta A Pagels; Fergus J Caskey; Claudia Torino; Gaetana Porto; Maciej Szymczak; Christiane Drechsler; Christoph Wanner; Friedo W Dekker; Ellen K Hoogeveen
Journal:  Clin J Am Soc Nephrol       Date:  2022-07-28       Impact factor: 10.614

Review 4.  Value-Based Care and Kidney Disease: Emergence and Future Opportunities.

Authors:  Sri Lekha Tummalapalli; Mallika L Mendu
Journal:  Adv Chronic Kidney Dis       Date:  2022-01       Impact factor: 4.305

5.  Classification of Uremic Toxins and Their Role in Kidney Failure.

Authors:  Mitchell H Rosner; Thiago Reis; Faeq Husain-Syed; Raymond Vanholder; Colin Hutchison; Peter Stenvinkel; Peter J Blankestijn; Mario Cozzolino; Laurent Juillard; Kianoush Kashani; Manish Kaushik; Hideki Kawanishi; Ziad Massy; Tammy Lisa Sirich; Li Zuo; Claudio Ronco
Journal:  Clin J Am Soc Nephrol       Date:  2021-07-07       Impact factor: 8.237

6.  The role of kidney registries in expediting large-scale collection of patient-reported outcome measures for people with chronic kidney disease.

Authors:  Sabine N van der Veer; Cecile Couchoud; Rachael L Morton
Journal:  Clin Kidney J       Date:  2021-03-16

Review 7.  Development of a preliminary conceptual model of the patient experience of chronic kidney disease: a targeted literature review and analysis.

Authors:  Jennifer E Flythe; Niklas Karlsson; Anna Sundgren; Paul Cordero; Amanda Grandinetti; Henry Cremisi; Anna Rydén
Journal:  BMC Nephrol       Date:  2021-06-23       Impact factor: 2.388

8.  Intradialytic Symptoms and Recovery Time: Thinking 'Outside the Box' to Improve Patients' Dialysis Experience.

Authors:  Ebele M Umeukeje; Kerri L Cavanaugh
Journal:  Kidney Med       Date:  2020-02-28

9.  Patient reactions to witnessed medical events in the dialysis center or to the sudden absence of other patients from the center: A qualitative study.

Authors:  Sarah J Ramer; M Carrington Reid; Mark L Unruh
Journal:  Hemodial Int       Date:  2020-10-25       Impact factor: 1.812

Review 10.  The current and future landscape of dialysis.

Authors:  Jonathan Himmelfarb; Raymond Vanholder; Rajnish Mehrotra; Marcello Tonelli
Journal:  Nat Rev Nephrol       Date:  2020-07-30       Impact factor: 28.314

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