Despite numerous calls for greater participation by patients in the medical decision-making process,1,2 shared decision-making is not yet integrated into routine medical care, perhaps because of a perception that patients wish to defer to their physicians. We sought to investigate preferences for participation in the decision-making process among individuals hospitalized with an acute myocardial infarction (AMI).
We combined data from 2 similar AMI registries: Translational Research Investigating Underlying Disparities in Acute Myocardial Infarction Patients’ Health Status (TRIUMPH) and the Prospective Registry Evaluating Outcomes After Myocardial Infarction: Events and Recovery (PREMIER). The studies, which have been previously described, had similar inclusion criteria and common enrollment sites.3,4 We collected, among other information, detailed data on clinical comorbidities, admission and discharge medications, electrocardiogram performed at presentation, and treatments during the first 24 hours through medical chart abstraction. Trained hospital research staff administered interviews 24 to 72 hours after admission.
We assessed patient shared decision-making preferences with the question, “Given the information about risks and benefits of the possible treatments, who should decide which treatment option should be selected?”5 The response rate to the question was 96.6% (2414 of 2498) for PREMIER and 97.3% (4222 of 4340) for TRIUMPH. Patients responded on a 5-point Likert scale: 1, physician alone; 2, mostly physician; 3, physician and patient; 4, mostly patient; and 5, patient alone. We dichotomized the response into 2 categories: passive (Likert scores 1 and 2) and active (3, 4, and 5). We compared the baseline characteristics of patients with and without a preference to be actively involved and developed a predictive model using a hierarchical modified Poisson regression model, which adjusted for clustering at the hospital level. All tests for significance were 2-tailed with an α level of .05 and were conducted with SAS statistical software (version 9.1.3; SAS Institute Inc) and R software (version 2.6.0).
Of 6636 patients in the study sample, 4536 (68.4%) desired active engagement in shared decision-making (Table). Among those, 2735 (60.3%) indicated that the physician and patient should participate equally, 696 (15.3%) indicated that the patient should predominantly determine the decision, and 1105 (24.4%) said that the patient alone should determine it. For all patient characteristics, the majority (68.0%) preferred an active role in decision-making. Those who preferred an active role tended to be younger, but none of the age groups had less than a majority that preferred active engagement. Compared with patients who did not complete high school, patients who had a college degree and those with a graduate degree had a much greater likelihood of preferring an active approach. However, even among those with less than a high school education, 57.5% preferred an active style. Financial resources were not associated with preferences. In the multivariable model, we identified 7 variables with a significant and independent association with an active decision-making preference: female sex, white race, higher education, smoker, heart failure, lower Global Registry of Acute Coronary Events risk score, and not undergoing percutaneous coronary intervention during the hospitalization. The discrimination of the final model was modest, with a C statistic of 0.61.
More than two-thirds of patients with AMI indicated a preference to play an active role in the decision-making process, and of those, about a quarter preferred that the decision be theirs alone rather than shared with their physician. In addition, demographic and clinical characteristics were not good predictors of which patients would prefer an active role. The results of this study highlight that a majority of patients want to be involved in decision-making, while also showing that there is a marked minority of patients who would prefer to be passive.
While some studies used hypothetical situations to assess decision-making preferences, we directly elicited patients’ preferences at the time that decisions were being made. The predictive model had limited discrimination. Our findings indicate that physicians who aspire to provide patient-centered care should assess patients’ decision-making preferences by directly asking each patient.
A potential limitation of this study is the approach we used to elicit patient decision-making responses. We may have failed to capture the full scope of patient preferences, and mixed-methods studies may reveal nuances to these preferences that are not readily apparent in a fixed-response question.
Decision-making preferences vary among patients after an AMI, but many patients prefer an active style. To know a patient’s preference requires a specific conversation. Our challenge now is to develop systems that fully respect these preferences and ensure that patients who prefer an active role are given that opportunity.
Corresponding Author: Harlan M. Krumholz, MD, SM, Cardiovascular Section, Yale University School of Medicine, 1 Church St, Ste 200, New Haven, CT 06510 (firstname.lastname@example.org).
Published Online: May 27, 2013. doi:10.1001/jamainternmed.2013.6057
Author Contributions: Mr Jones and Dr Li had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Study concept and design: Krumholz.
Acquisition of data: Krumholz.
Analysis and interpretation of data: All authors.
Drafting of the manuscript: Krumholz.
Critical revision of the manuscript for important intellectual content: All authors.
Statistical analysis: Jones and Li.
Obtained funding: Krumholz and Spertus.
Administrative, technical, and material support: Spertus.
Study supervision: Krumholz.
Conflict of Interest Disclosures: Dr Krumholz chairs a cardiac scientific advisory board for UnitedHealth and is the recipient of a research grant, through Yale University, from Medtronic. Dr Spertus has received grant support from Lilly, Genentech, and EvaHeart. He serves on a cardiac scientific advisory board for UnitedHealth, and as a consultant to Genentech, Amgen, and St Jude Medical. He has an equity position in Health Outcomes Sciences and owns the copyrights to the Seattle Angina Questionnaire, Kansas City Cardiomyopathy Questionnaire, and Peripheral Artery Questionnaire.
Funding/Support: The TRIUMPH study was supported by grant P50 HL077113 from the Specialized Center of Clinically Oriented Research in Cardiac Dysfunction and Disease from the National Heart, Lung, and Blood Institute (NHLBI) in Bethesda, Maryland. PREMIER was funded by CV Therapeutics Inc, Palo Alto, California. This study was also funded in part by CV Outcomes Inc, Kansas City, Missouri. Dr Krumholz receives funding from grant U01 HL105270-03 (Center for Cardiovascular Outcomes Research at Yale University) from the NHLBI. During the time that this work was conducted, Dr Barreto-Filho was a postdoctoral fellow at Yale University supported by grant 3436-10-1 from CAPES (Coordenação de Aperfeicoamento de Pessoal de Nível Superior, Ministry of Education, Brazil). Dr Spertus has received funding from the NHLBI, the American Heart Association in Dallas, Texas, and the American College of Cardiology Foundation in Washington, DC.
Role of the Sponsors: The funding sponsors had no role in the design and conduct of the study; in the collection, management, analysis, and interpretation of the data; or in the preparation, review, or approval of the manuscript.
Additional Information: Dr Barreto-Filho is now with the Division of Cardiology, Federal University of Sergipe, Aracaju, Sergipe, Brazil.
Additional Contributions: We gratefully acknowledge the contributions of Vishnu Patlolla, MD, Gregory Mulvey, MD, and Marian Mocanu, MD.
et al; American Heart Association; Council on Quality of Care and Outcomes Research; Council on Cardiovascular Nursing; Council on Clinical Cardiology; Council on Cardiovascular Radiology and Intervention; Council on Cardiovascular Surgery and Anesthesia. Decision making in advanced heart failure: a scientific statement from the American Heart Association. Circulation
. 2012;125(15):1928-1952.PubMedGoogle ScholarCrossref
et al; American College of Cardiology Foundation. ACCF 2012 health policy statement on patient-centered care in cardiovascular medicine: a report of the American College of Cardiology Foundation Clinical Quality Committee. J Am Coll Cardiol
. 2012;59(23):2125-2143.PubMedGoogle ScholarCrossref
et al; Cardiovascular Outcomes Research Consortium. Translational Research Investigating Underlying Disparities in Acute Myocardial Infarction Patients’ Health Status (TRIUMPH): design and rationale of a prospective multicenter registry. Circ Cardiovasc Qual Outcomes
. 2011;4(4):467-476.PubMedGoogle ScholarCrossref
H; Cardiovascular Outcomes Research Consortium. The Prospective Registry Evaluating Myocardial Infarction: Events and Recovery (PREMIER): evaluating the impact of myocardial infarction on patient outcomes. Am Heart J
. 2006;151(3):589-597.PubMedGoogle ScholarCrossref
J. What role do patients wish to play in treatment decision making? Arch Intern Med
. 1996;156(13):1414-1420.PubMedGoogle ScholarCrossref