A Prospective Cohort Study of Medical Decision-Making Roles and Their Associations with Patient Characteristics and Patient-Reported Outcomes among Patients with Heart Failure.
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2023-09
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Abstract
Objective
Among patients with heart failure (HF), we examined 1) the evolution of patient involvement in decision making over 2 y, 2) the association of patient characteristics with decision-making roles, and 3) the association of decision-making roles with distress, spiritual well-being, and quality of physician communication.Methods
We administered the survey every 4 mo over 24 mo to patients with New York Heart Association class 3/4 symptoms recruited from inpatient clinics. The decision-making roles were categorized as no patient involvement, physician/family-led, joint (with family and/or physicians), patient-led, or patient-alone decision making. The associations between patient characteristics and decision-making roles were assessed using a mixed-effects ordered logistic regression, whereas those between patient outcomes and decision-making roles were investigated using mixed-effects linear regressions.Results
Of the 557 patients invited, 251 participated in the study. The most common roles in decision making at baseline assessment were "no involvement" (27.53%) and "patient-alone decision making" (25.10%). The proportions of different decision-making roles did not change over 2 y (P = 0.37). Older age (odds ratio [OR] = 0.97; P = 0.003) and being married (OR = 0.63; P = 0.035) were associated with lower involvement in decision making. Chinese ethnicity (OR = 1.91; P = 0.003), higher education (OR = 1.87; P = 0.003), awareness of terminal condition (OR = 2.00; P < 0.001), and adequate self-care confidence (OR = 1.74; P < 0.001) were associated with greater involvement. Compared with no patient involvement, joint (β = -0.58; P = 0.026) and patient-led (β = -0.59; P = 0.014) decision making were associated with lower distress, while family/physician-led (β = 4.37; P = 0.001), joint (β = 3.86; P < 0.001), patient-led (β = 3.46; P < 0.001), and patient-alone (β = 3.99; P < 0.001) decision making were associated with better spiritual well-being.Conclusion
A substantial proportion of patients was not involved in decision making. Patients should be encouraged to participate in decision making since it is associated with lower distress and better spiritual well-being.Highlights
The level of involvement in medical decision making did not change over time among patients with heart failure. A substantial proportion of patients were not involved in decision making throughout the 24-mo study period.Patients' involvement in decision making varied by age, ethnicity, education level, marital status, awareness of the terminal condition, and confidence in self-care.Compared with no patient involvement in decision making, joint and patient-led decision making were associated with lower distress, and any level of patient involvement in decision making was associated with better spiritual well-being.Type
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Ozdemir, Semra, Jia Jia Lee, Khung Keong Yeo, Kheng Leng David Sim, Eric Andrew Finkelstein and Chetna Malhotra (2023). A Prospective Cohort Study of Medical Decision-Making Roles and Their Associations with Patient Characteristics and Patient-Reported Outcomes among Patients with Heart Failure. Medical decision making : an international journal of the Society for Medical Decision Making. p. 272989X231201609. 10.1177/0272989x231201609 Retrieved from https://hdl.handle.net/10161/29335.
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Semra Ozdemir
Dr. Ozdemir is an Associate Professor in the Department of Population Health Sciences at Duke University and is affiliated with Duke Clinical Research Institute. She also holds a joint appointment at the Signature Programme in Health Services and Systems Research at Duke-NUS Medical School in Singapore. Dr. Ozdemir’s research focuses on three areas of medical decision making: 1) assessing individuals’ preferences and values for healthcare services and products, 2) understanding the medical decision-making process among patients, their family caregivers, and clinicians, and 3) developing decision aids or tools to help individuals make better-informed medical decisions. She uses survey methods, cohort studies, and implementation science principles to conduct research in these areas.
Dr. Ozdemir is an expert in stated-preference methods and shared decision-making tools. Dr. Ozdemir led a large team of health communication and decision science experts and clinicians in the development of an educational and preference-based decision aid for older patients with end-stage kidney disease who are considering dialysis or kidney supportive care. She is an Associate Editor for Value in Health and has served on the editorial boards for Medical Decision Making and Applied Health Economics and Health Policy. She is also the co-chair of the Shared Decision Making Special Interest Group for the Society for Medical Decision Making.
Dr. Ozdemir has a personal interest and commitment to eliminating disparities in making quality medical decisions and promoting diversity stemming from her personal experience, professional career, and many years of living and working in different countries. She loves running, paddling, travelling, and cheering for her sons in their soccer games and bike races.
Areas of expertise: Medical decision making, shared decision making, health preference assessment, stated-preference methods, decision aid research.
Eric Andrew Finkelstein
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