TO THE EDITOR
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).
METHODS
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 Infarctions: 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, presenting electrocardiogram, and treatments during the first 24 hours through chart abstraction. Trained hospital research staff administered interviews between 24 and 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% (2,414 of 2,498) for PREMIER and 97.3% (4,222 of 4,340) for TRIUMPH. Patients responded on a 5-point Likert scale: 1=doctor alone, 2=mostly doctor, 3=doctor and you, 4=mostly you, 5=you 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 employing 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 0.05, and were conducted with SAS version 9.1.3 (SAS Institute Inc., Cary, NC) and R version 2.6.0 (Vienna, Austria).
RESULTS
Of 6,636 patients in the study sample, 4,536 (68%) desired active engagement in shared decision-making (Table). Among those, 2,735 (60.3%) indicated that the doctor and patient should participate equally, 696 (15.3%) indicated that the patient should predominantly determine the decision, and 1,105 (24.4%) said that the patient alone should determine it. For all patient characteristics, the majority (68%) 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, 58% 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: women, white race, higher education, smoker, heart failure, lower GRACE risk score, and not undergoing PCI during the hospitalization. The discrimination of the final model was modest, with a c-statistic of 0.61.
Table.
Associations between patient characteristics and preferences.
| Desire for decision-making role |
|||
|---|---|---|---|
| Active (n=4536) | Passive (n=2100) | P-Value | |
| Demographics | |||
| Age | 59.0 ± 12.5 | 61.0 ± 12.8 | <0.001 |
| 19 - <55 | 1745 (72.3%) | 668 (27.7%) | <0.001 |
| 55 - <65 | 1354 (67.3%) | 659 (32.7%) | |
| 65 - <75 | 843 (67.0%) | 415 (33.0%) | |
| 75 - 98 | 594 (62.4%) | 358 (37.6%) | |
| Sex | 0.045 | ||
| Male | 3002 (67.6%) | 1442 (32.4%) | |
| Female | 1534 (70.0%) | 658 (30.0%) | |
| Race | <0.001 | ||
| White/Caucasian | 3247 (70.3%) | 1373 (29.7%) | |
| Black/African American | 1028 (64.1%) | 575 (35.9%) | |
| Other | 243 (62.5%) | 146 (37.5%) | |
| Unknown | 18 | 6 | |
| Social and economic factors | |||
| Married | 0.785 | ||
| Yes | 2446 (68.5%) | 1123 (31.5%) | |
| No | 2076 (68.2%) | 967 (31.8%) | |
| Missing | 14 | 10 | |
| Education | <0.001 | ||
| Less than high school | 794 (57.5%) | 588 (42.5%) | |
| High school or some college/vocational school | 2643 (68.9%) | 1193 (31.1%) | |
| College degree | 666 (77.0%) | 199 (23.0%) | |
| Graduate degree | 407 (79.8%) | 103 (20.2%) | |
| Missing | 26 | 17 | |
| Payor | <0.001 | ||
| Commercial/Preferred Provider Organization | 1850 (70.7%) | 766 (29.3%) | |
| Health Maintenance Organization | 540 (70.9%) | 222 (29.1%) | |
| Medicare | 861 (64.0%) | 484 (36.0%) | |
| Medicaid | 236 (66.1%) | 121 (33.9%) | |
| Other | 202 (68.5%) | 93 (31.5%) | |
| None/Self-pay | 724 (66.4%) | 367 (33.6%) | |
| Missing | 123 | 47 | |
| Work/pay status | <0.001 | ||
| Yes, I work full-time for pay | 1788 (71.5%) | 712 (28.5%) | |
| Yes, I work part-time for pay | 409 (68.4%) | 189 (31.6%) | |
| No, I don't currently work for pay | 2306 (66.0%) | 1186 (34.0%) | |
| Missing | 33 | 13 | |
| Avoidance of health care due to cost | 0.472 | ||
| Yes | 1034 (69.2%) | 461 (30.8%) | |
| No | 3441 (68.2%) | 1606 (31.8%) | |
| Missing | 61 | 33 | |
| ENRICHD social support score | 22.0 ± 4.4 | 21.8 ± 4.6 | 0.117 |
| Missing | 106 | 44 | |
| PHQ 8-item Depression Score | 5.2 ± 5.2 | 5.4 ± 5.3 | 0.241 |
| Missing | 203 | 87 | |
| Having a primary care physician | 0.267 | ||
| None | 445 (69.0%) | 200 (31.0%) | |
| Emergency | 154 (63.6%) | 88 (36.4%) | |
| Other | 3895 (68.5%) | 1794 (31.5%) | |
| Missing | 42 | 18 | |
| Clinical factors | |||
| Hypercholesterolemia | 0.760 | ||
| Yes | 2213 (68.2%) | 1033 (31.8%) | |
| No | 2323 (68.5%) | 1067 (31.5%) | |
| Hypertension | 0.055 | ||
| Yes | 2930 (67.6%) | 1407 (32.4%) | |
| No | 1606 (69.9%) | 693 (30.1%) | |
| Peripheral arterial disease | 0.379 | ||
| Yes | 252 (66.3%) | 128 (33.7%) | |
| No | 4284 (68.5%) | 1972 (31.5%) | |
| Diabetes | <0.001 | ||
| Yes | 1294 (65.4%) | 685 (34.6%) | |
| No | 3242 (69.6%) | 1415 (30.4%) | |
| Chronic renal failure | 0.424 | ||
| Yes | 385 (69.9%) | 166 (30.1%) | |
| No | 4151 (68.2%) | 1934 (31.8%) | |
| Chronic lung disease | 0.283 | ||
| Yes | 416 (66.5%) | 210 (33.5%) | |
| No | 4120 (68.6%) | 1890 (31.4%) | |
| Congestive heart failure | 0.184 | ||
| Yes | 428 (66.0%) | 220 (34.0%) | |
| No | 4108 (68.6%) | 1880 (31.4%) | |
| Cancer (excluding skin cancer) | 0.362 | ||
| Yes | 334 (66.5%) | 168 (33.5%) | |
| No | 4202 (68.5%) | 1932 (31.5%) | |
| Smoking | 0.125 | ||
| Never | 1043 (68.0%) | 491 (32.0%) | |
| In the past (<100 total) | 247 (70.8%) | 102 (29.2%) | |
| Stopped >1 year ago | 1339 (66.6%) | 671 (33.4%) | |
| Stopped 1 month to 1 year ago | 164 (65.9%) | 85 (34.1%) | |
| Current (past 30 days) | 1724 (69.9%) | 743 (30.1%) | |
| Missing | 19 | 8 | |
| Body mass index | 0.059 | ||
| 10 - <30 | 2530 (67.6%) | 1214 (32.4%) | |
| 30 - 82 | 1766 (69.8%) | 763 (30.2%) | |
| Missing | 240 | 123 | |
| Family history of coronary artery disease | 0.001 | ||
| Yes | 2741 (70.0%) | 1176 (30.0%) | |
| No | 1773 (66.2%) | 907 (33.8%) | |
| Missing | 21 | 17 | |
| Unknown | 1 | ||
| Medication/counseling for depression | 0.374 | ||
| Yes | 559 (69.8%) | 242 (30.2%) | |
| No | 3945 (68.2%) | 1837 (31.8%) | |
| Missing | 32 | 21 | |
| Clinical history | |||
| Angina | 0.966 | ||
| Yes | 719 (68.4%) | 332 (31.6%) | |
| No | 3817 (68.3%) | 1768 (31.7%) | |
| Acute myocardial infarction | 0.016 | ||
| Yes | 923 (65.7%) | 482 (34.3%) | |
| No | 3613 (69.1%) | 1618 (30.9%) | |
| Coronary artery bypass graft surgery | 0.212 | ||
| Yes | 524 (66.4%) | 265 (33.6%) | |
| No | 4012 (68.6%) | 1835 (31.4%) | |
| Percutaneous coronary intervention | 0.085 | ||
| Yes | 835 (66.3%) | 424 (33.7%) | |
| No | 3701 (68.8%) | 1676 (31.2%) | |
| Stroke | <0.001 | ||
| Yes | 215 (58.9%) | 150 (41.1%) | |
| No | 4321 (68.9%) | 1950 (31.1%) | |
| Severity of acute myocardial infarction | |||
| ST-elevation acute myocardial infarction | 0.270 | ||
| Yes | 1990 (69.1%) | 891 (30.9%) | |
| No | 2546 (67.8%) | 1209 (32.2%) | |
| Ejection fraction <40% | 0.001 | ||
| Yes | 875 (65.1%) | 470 (34.9%) | |
| No | 3018 (69.8%) | 1308 (30.2%) | |
| Missing | 643 | 322 | |
| Killip class | 0.399 | ||
| I | 3719 (68.7%) | 1693 (31.3%) | |
| II | 419 (66.0%) | 216 (34.0%) | |
| III | 79 (66.9%) | 39 (33.1%) | |
| IV | 37 (62.7%) | 22 (37.3%) | |
| Unknown | 282 | 130 | |
| Diseased vessels | 0.006 | ||
| 0 | 399 (73.2%) | 146 (26.8%) | |
| 1 | 1854 (69.6%) | 810 (30.4%) | |
| 2 | 988 (66.5%) | 497 (33.5%) | |
| 3 | 863 (66.3%) | 438 (33.7%) | |
| Missing | 432 | 209 | |
| Revascularization type | 0.974 | ||
| None | 1241 (68.2%) | 579 (31.8%) | |
| Percutaneous coronary intervention | 2835 (68.4%) | 1311 (31.6%) | |
| Coronary artery bypass graft surgery | 460 (68.7%) | 210 (31.3%) | |
| Acute systolic blood pressure | 141.7 ± 31.0 | 141.5 ± 30.1 | 0.725 |
| Missing | 60 | 30 | |
| Initial heart rate | 81.7 ± 21.6 | 83.1 ± 22.5 | 0.022 |
| Missing | 45 | 22 | |
| GRACE 6-month mortality risk score | 101.3 ± 30.5 | 106.0 ± 31.8 | <0.001 |
| Percent of eligible QOC indicators received | 0.252 | ||
| 0 - <90 | 1556 (67.5%) | 750 (32.5%) | |
| 90 - 100 | 2975 (68.8%) | 1346 (31.2%) | |
| Missing | 5 | 4 | |
Continuous variables compared using Student's t-test; categorical variables compared using chi-square or Fisher exact test.
ENRICHD, Enhancing Recovery in Coronary Heart Disease Patients; GRACE, Global Registry of Acute Coronary Events; PHQ, Patient Health Questionnaire; QOC, quality of care
COMMENT
More than two-thirds of AMI patients 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 doctor. In addition, demographic and clinical characteristics did not predict well who preferred an active role. The results of this study highlight that a great 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.
ACKNOWLEDGMENT
We gratefully acknowledge Vishnu Patlolla, Gregory Mulvey, and Marian Mocanu for their contributions, which were provided without compensation.
Sources of Funding: 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 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. 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 been funded by the National Heart, Lung, and Blood Institute in Bethesda, Maryland, the American Heart Association in Dallas, Texas, and the American College of Cardiology Foundation in Washington, District of Columbia. Dr. Krumholz is funded by grant U01 HL105270-03 (Center for Cardiovascular Outcomes Research at Yale University) from the National Heart, Lung, and Blood Institute in Bethesda, Maryland.
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.
Footnotes
Author Contributions:
Study concept and design: Krumholz, Spertus
Acquisition of data: Krumholz, Spertus
Analysis and interpretation of data: Barreto-Filho, Jones, Krumholz, Li, Spertus
Drafting of the manuscript: Krumholz
Critical revision of the manuscript for important intellectual content: Barreto-Filho, Jones, Krumholz, Li, Spertus
Statistical analysis: Jones, Li
Obtained funding: Krumholz, Spertus
Administrative, technical, or material support: N/A
Study supervision: Krumholz, Spertus
Conflict of Interest Disclosure:
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 copyright to the Seattle Angina Questionnaire, Kansas City Cardiomyopathy Questionnaire, and Peripheral Artery Questionnaire.
Data Access and Responsibility:
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.
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