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      Changes over Time in Patient Stated Values and Treatment Preferences Regarding Aggressive Therapies: Insights from the DECIDE-LVAD Trial

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          Abstract

          Background

          Patient-centered care includes matching treatments to patient values and preferences. This assumes clarity and consistency of values and preferences relevant to major medical decisions. We sought to describe stability of patient-reported values regarding aggressiveness of care and preferences for left ventricular assist devices (LVADs) for advanced heart failure.

          Methods and Results

          We conducted a secondary analysis of patients undergoing LVAD evaluation at 6 US centers. Surveys at baseline, 1 month, and 6 months included a single 10-point scale on the value of aggressive care (score 1 = “do everything,” 10 = “live with whatever time I have left”) and treatment preference (LVAD, unsure, no LVAD). Data were captured for 232 patients, of whom 196 were ultimately deemed medically eligible for LVAD, and 161 were surgically implanted by 1 month. Values at baseline favored aggressive care (mean [SD], 2.49 [2.63]), trending toward less aggressive over time (1 month, 2.63 [2.05]; 6 months, 3.22 [2.70]). Between baseline and 1 month, values scores changed by ≥2 points in 28% (50/176), as did treatment preferences for 18% (29/161) of patients. Values score changes over time were associated with lower illness acceptance, depression, and eventual LVAD ineligibility. Treatment preference change was associated with values score change.

          Conclusion

          Most patients considering LVAD were stable in their values and treatment preferences. This stability, as well as the association between unstable treatment preferences and changes to stated values, highlighted the clinical utility of the values scale of aggressiveness. However, a substantial minority reported significant changes over time that may complicate the process of shared decision making. Improved methods to elicit and clarify values, including support to those with depression and low illness acceptance, is critical for patient-centered care.

          Highlights
          1. Self-reported values and preferences change significantly over time in about a quarter of patients actively considering left ventricular assist device implantation.

          2. Instability in stated values and preferences challenges clinicians who want to maximally match patient preferences to the treatments they receive.

          3. For most patients, clinicians can normalize the desire to maximize survival and empathize with the difficulty of making the decision. For others, clinicians may want to help patients explore the benefits and tradeoffs of therapy, including whether values other than the ones being asked about dominate their consideration.

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          Most cited references29

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          The PHQ-9

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            EuroQol: the current state of play.

            R. Brooks (1996)
            The EuroQol Group first met in 1987 to test the feasibility of jointly developing a standardised non-disease-specific instrument for describing and valuing health-related quality of life. From the outset the Group has been multi-country, multi-centre, and multi-disciplinary. The EuroQol instrument is intended to complement other forms of quality of life measures, and it has been purposefully developed to generate a cardinal index of health, thus giving it considerable potential for use in economic evaluation. Considerable effort has been invested by the Group in the development and valuation aspects of health status measurement. Earlier work was reported upon in 1990; this paper is a second 'corporate' effort detailing subsequent developments. The concepts underlying the EuroQol framework are explored with particular reference to the generic nature of the instrument. The valuation task is reviewed and some evidence on the methodological requirements for measurement is presented. A number of special issues of considerable interest and concern to the Group are discussed: the modelling of data, the duration of health states and the problems surrounding the state 'dead'. An outline of some of the applications of the EuroQol instrument is presented and a brief commentary on the Group's ongoing programme of work concludes the paper.
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              2017 ACC/AHA/HFSA Focused Update of the 2013 ACCF/AHA Guideline for the Management of Heart Failure

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                Author and article information

                Contributors
                Journal
                Med Decis Making
                Med Decis Making
                MDM
                spmdm
                Medical Decision Making
                SAGE Publications (Sage CA: Los Angeles, CA )
                0272-989X
                1552-681X
                23 July 2021
                April 2022
                : 42
                : 3
                : 404-414
                Affiliations
                [1-0272989X211028234]Division of Cardiology, School of Medicine, University of Colorado, Aurora, CO, USA
                [2-0272989X211028234]Adult & Child Consortium for Health Outcomes Research & Delivery Science, School of Medicine, University of Colorado, Aurora, CO, USA
                [3-0272989X211028234]Adult & Child Consortium for Health Outcomes Research & Delivery Science, School of Medicine, University of Colorado, Aurora, CO, USA
                [4-0272989X211028234]Adult & Child Consortium for Health Outcomes Research & Delivery Science, School of Medicine, University of Colorado, Aurora, CO, USA
                [5-0272989X211028234]Division of Geriatric Medicine, School of Medicine, University of Colorado, Aurora, CO, USA
                [6-0272989X211028234]Section of Palliative Care and Medical Ethics, Division of General Medicine, University of Pittsburgh Medical Center, Pittsburgh, PA, USA
                [7-0272989X211028234]Adult & Child Consortium for Health Outcomes Research & Delivery Science, School of Medicine, University of Colorado, Aurora, CO, USA
                [8-0272989X211028234]Division of Cardiology, School of Medicine, University of Colorado, Aurora, CO, USA
                [9-0272989X211028234]Adult & Child Consortium for Health Outcomes Research & Delivery Science, School of Medicine, University of Colorado, Aurora, CO, USA
                [10-0272989X211028234]Division of Cardiology, School of Medicine, University of Colorado, Aurora, CO, USA
                [11-0272989X211028234]Adult & Child Consortium for Health Outcomes Research & Delivery Science, School of Medicine, University of Colorado, Aurora, CO, USA
                [12-0272989X211028234]Division of Cardiology, School of Medicine, University of Colorado, Aurora, CO, USA
                [13-0272989X211028234]Division of Cardiology, School of Medicine, University of Colorado, Aurora, CO, USA
                [14-0272989X211028234]Adult & Child Consortium for Health Outcomes Research & Delivery Science, School of Medicine, University of Colorado, Aurora, CO, USA
                [15-0272989X211028234]Section of Palliative Care and Medical Ethics, Division of General Medicine, University of Pittsburgh Medical Center, Pittsburgh, PA, USA
                [16-0272989X211028234]Division of Cardiology, School of Medicine, University of Colorado, Aurora, CO, USA
                [17-0272989X211028234]Adult & Child Consortium for Health Outcomes Research & Delivery Science, School of Medicine, University of Colorado, Aurora, CO, USA
                Author notes
                [*]Christopher E. Knoepke, Adult and Child Consortium for Outcomes Research & Delivery Science, School of Medicine, University of Colorado, 13199 E. Montview Blvd, Suite 300, Aurora, CO 80045, USA. ( Christopher.Knoepke@ 123456cuanschutz.edu )
                Author information
                https://orcid.org/0000-0003-3521-7157
                https://orcid.org/0000-0001-9597-9642
                https://orcid.org/0000-0002-2437-1477
                https://orcid.org/0000-0002-8660-7115
                Article
                10.1177_0272989X211028234
                10.1177/0272989X211028234
                8783927
                34296623
                0fb393bf-c160-4c01-b9de-5e43b40a3d9a
                © The Author(s) 2021

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                : 10 November 2020
                : 2 June 2021
                Funding
                Funded by: National Heart, Lung, and Blood Institute, FundRef https://doi.org/10.13039/100000050;
                Award ID: K23HL153892
                Funded by: American Heart Association, FundRef https://doi.org/10.13039/100000968;
                Award ID: 18CDA34110026
                Funded by: Patient-Centered Outcomes Research Institute, FundRef https://doi.org/10.13039/100006093;
                Award ID: CDR-1310-06998
                Categories
                Original Research Articles
                Custom metadata
                ts1

                Medicine
                heart failure,left ventricular assist device,patient-centered care,shared decision making,patient values

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