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

Overview

Journal Am J Kidney Dis

Specialty Nephrology

Date 2019 Sep 8

PMID 31492487

Citations 21

Authors

Devika Nair

F Perry Wilson

Affiliations

Soon will be listed here.

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.

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References

Lango M, Egleston B, Fang C, Burtness B, Galloway T, Liu J . Baseline health perceptions, dysphagia, and survival in patients with head and neck cancer. Cancer. 2013; 120(6):840-7. PMC: 3951722. DOI: 10.1002/cncr.28482. View

Weldring T, Smith S . Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs). Health Serv Insights. 2014; 6:61-8. PMC: 4089835. DOI: 10.4137/HSI.S11093. View

Lacson Jr E, Xu J, Lin S, Dean S, Lazarus J, Hakim R . A comparison of SF-36 and SF-12 composite scores and subsequent hospitalization and mortality risks in long-term dialysis patients. Clin J Am Soc Nephrol. 2009; 5(2):252-60. PMC: 2827595. DOI: 10.2215/CJN.07231009. View

Kalantar-Zadeh K, Kopple J, Block G, Humphreys M . Association among SF36 quality of life measures and nutrition, hospitalization, and mortality in hemodialysis. J Am Soc Nephrol. 2001; 12(12):2797-2806. DOI: 10.1681/ASN.V12122797. View

Ware Jr J, Richardson M, Meyer K, Gandek B . Improving CKD-Specific Patient-Reported Measures of Health-Related Quality of Life. J Am Soc Nephrol. 2019; 30(4):664-677. PMC: 6442339. DOI: 10.1681/ASN.2018080814. View

Calvert M, Blazeby J, Altman D, Revicki D, Moher D, Brundage M . Reporting of patient-reported outcomes in randomized trials: the CONSORT PRO extension. JAMA. 2013; 309(8):814-22. DOI: 10.1001/jama.2013.879. View

Perrone R, Coons S, Cavanaugh K, Finkelstein F, Meyer K . Patient-reported outcomes in clinical trials of CKD-related therapies: report of a symposium sponsored by the national kidney foundation and the U.S. Food and Drug Administration. Am J Kidney Dis. 2013; 62(6):1046-57. DOI: 10.1053/j.ajkd.2013.07.004. View

Viecelli A, Tong A, OLone E, Ju A, Hanson C, Sautenet B . Report of the Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Consensus Workshop on Establishing a Core Outcome Measure for Hemodialysis Vascular Access. Am J Kidney Dis. 2018; 71(5):690-700. DOI: 10.1053/j.ajkd.2017.12.003. View

Porter I, Goncalves-Bradley D, Ricci-Cabello I, Gibbons C, Gangannagaripalli J, Fitzpatrick R . Framework and guidance for implementing patient-reported outcomes in clinical practice: evidence, challenges and opportunities. J Comp Eff Res. 2016; 5(5):507-19. DOI: 10.2217/cer-2015-0014. View

10.

Hedayati S, Gregg L, Carmody T, Jain N, Toups M, Rush A . Effect of Sertraline on Depressive Symptoms in Patients With Chronic Kidney Disease Without Dialysis Dependence: The CAST Randomized Clinical Trial. JAMA. 2017; 318(19):1876-1890. PMC: 5710375. DOI: 10.1001/jama.2017.17131. View

11.

Calvert M, Kyte D, Mercieca-Bebber R, Slade A, King M, Hunn A . Guidelines for Inclusion of Patient-Reported Outcomes in Clinical Trial Protocols: The SPIRIT-PRO Extension. JAMA. 2018; 319(5):483-494. DOI: 10.1001/jama.2017.21903. View

12.

Mathias S, Vallow S, Gipson D, Thorneloe K, Sprecher D . Development of Focal Segmental Glomerulosclerosis Patient-Reported Outcome Measures: Symptom Diary and Symptom Impact Questionnaire. Am J Kidney Dis. 2017; 70(4):532-540. DOI: 10.1053/j.ajkd.2017.04.023. View

13.

Rao S, Carter W, Mapes D, Kallich J, Kamberg C, Spritzer K . Development of subscales from the symptoms/problems and effects of kidney disease scales of the kidney disease quality of life instrument. Clin Ther. 2000; 22(9):1099-111. DOI: 10.1016/S0149-2918(00)80087-9. View

14.

Franke G, Reimer J, Kohnle M, Luetkes P, Maehner N, Heemann U . Quality of life in end-stage renal disease patients after successful kidney transplantation: development of the ESRD symptom checklist - transplantation module. Nephron. 1999; 83(1):31-9. DOI: 10.1159/000045470. View

15.

Mokkink L, Terwee C, Patrick D, Alonso J, Stratford P, Knol D . The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res. 2010; 19(4):539-49. PMC: 2852520. DOI: 10.1007/s11136-010-9606-8. View

16.

Ziegelmann J, Griva K, Hankins M, Harrison M, Davenport A, Thompson D . The Transplant Effects Questionnaire (TxEQ): The development of a questionnaire for assessing the multidimensional outcome of organ transplantation - example of end stage renal disease (ESRD). Br J Health Psychol. 2003; 7(Part 4):393-408. DOI: 10.1348/135910702320645381. View

17.

Murphy S, Powers M, Jalowiec A . Psychometric evaluation of the Hemodialysis Stressor Scale. Nurs Res. 1985; 34(6):368-71. View

18.

Flythe J, Mangione T, Brunelli S, Curhan G . Patient-stated preferences regarding volume-related risk mitigation strategies for hemodialysis. Clin J Am Soc Nephrol. 2014; 9(8):1418-25. PMC: 4123390. DOI: 10.2215/CJN.03280314. View

19.

Ferrans C, Powers M . Quality of life index: development and psychometric properties. ANS Adv Nurs Sci. 1985; 8(1):15-24. DOI: 10.1097/00012272-198510000-00005. View

20.

Dobbels F, Berben L, de Geest S, Drent G, Lennerling A, Whittaker C . The psychometric properties and practicability of self-report instruments to identify medication nonadherence in adult transplant patients: a systematic review. Transplantation. 2010; 90(2):205-19. DOI: 10.1097/TP.0b013e3181e346cd. View