Utility of patient-reported outcome instruments in heart failure
Open accessAbstract
Patient-reported outcomes (PRO) are defined as reports coming directly from patients about how they feel or function in relation to a health condition and its therapy. Although there are numerous compelling reasons why PRO could be an important help in clinical care, they have not evolved into clinical tools integrated into care. The purpose of this review is to assess existing PRO instruments for heart failure with respect to their psychometric properties and potential for use in clinical care. We performed a systematic search of articles published between July 2008 and January 2015 within the MEDLINE, PROMIS, PROQOLID, and Cochrane Library databases. Included instruments had to be developed and tested for heart failure and have had their development processes and psychometric properties described. A total of 31 instruments were identified, 9 of which met all inclusion criteria. After evaluating each remaining instrument in terms of psychometric and clinical criteria and symptom coverage, only 2 instruments-Minnesota Living with Heart Failure and Kansas City Cardiomyopathy questionnaire-met all evaluation criteria. Although clinically useful PRO instruments exist, increasing education to providers on the value and interpretability of PRO instruments, as well as a more streamlined approach to their implementation in the clinical setting is necessary. A clinical trial comparing the routine use of disease-specific PRO with clinical care could further support their incorporation into practice.
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Patient-reported outcomes have been shown to provide a more accurate overall picture of disease status than physiological assessments such as left ventricular ejection fraction.
“PROs have been shown to provide a more accurate overall picture of disease status than physiological assessments such as left ventricular ejection fraction. 95”
From Prioritizing symptom management in the treatment of chronic heart failure (2020) · cites this paper as [95]
In “The History of Patient-Reported Outcomes in Clinical Practice” (page unavailable), the review says PROs are more reproducible than assessments of ejection fraction. It also says PROs capture aspects of patients’ health status that laboratory data or imaging cannot. It does not establish that PROs provide a more accurate overall picture of disease status than ejection fraction. (LLM, conf=0.84)
Experimental — accuracy not yet measuredNeither the KCCQ nor the MLHFQ comprehensively assesses physical, psychological, and social health contributors to quality of life.
“however, neither the KCCQ nor the MLHFQ comprehensively assesses physical, psychological, and social health contributors to QoL. 95”
From Prioritizing symptom management in the treatment of chronic heart failure (2020) · cites this paper as [95]
Despite a plethora of available tools (31 that the authors could find) with some use in clinical research, they are infrequently used to guide clinical practice.
“Despite a plethora of available tools (31 that we could find) with some use in clinical research, they are infrequently used to guide clinical practice. 95”
From Prioritizing symptom management in the treatment of chronic heart failure (2020) · cites this paper as [95]
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References 55 · Cited by 179
Research works printed but not linked: 2
- Institute of Medicine. Crossing the Quality Chasm: A New Health System for the Twenty-First Century. Washington, DC: National Academy Press, 2001.
- KEY WORDS heart failure, patient-reported outcomes APPENDIX For supplemental material, please see the online version of this article. JACC: HEART FAILURE VOL. 4, NO. 3, 2016
- Authors
- Kelkar, A. A., Spertus, J., Pang, P., Pierson, R. F., Cody, R. J., Pina, I. L., Hernandez, A., & Butler, J.
- Affiliations
- Emory University (US)
- Indiana University Indianapolis (US)
- Johnson & Johnson (United States) (US)
- Duke University (US)
- Stony Brook Medicine (US)
- Corresponding author
- Butler, Javed
- Venue
- JACC: Heart Failure
- Publisher
- Elsevier BV
- Published
- 2016-03
- Volume
- 4
- Issue
- 3
- Pages
- 165-175
- ISSN
- 2213-1779 (ISSN-L)
- OpenAlex
- W2254147853
- Cited by
- 179
- References
- 55
- Citations by year
- 2026: 14 · 2025: 11 · 2024: 18 · 2023: 22 · 2022: 19 · 2021: 24 · 2020: 30 · 2019: 23 · 2018: 8 · 2017: 7 · 2016: 3
- FWCI
- 2.39
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- JACC Heart Failure (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Amgen
- AstraZeneca
- European Commission
- National Institutes of Health
- Topics
- Health Sciences › Medicine › Cardiology and Cardiovascular Medicine › Heart Failure Treatment and Management
- Social Sciences › Education › Health Education and Validation
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Keywords
- patient-reported outcomes, heart failure, outcome measurement instruments, psychometric properties, Minnesota Living with Heart Failure Questionnaire, Kansas City Cardiomyopathy Questionnaire, provider education
- MeSH terms
- Patient Reported Outcome Measures, Clinical Trials as Topic, Heart Failure, Humans, Psychometrics, Surveys and Questionnaires
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