• A Qualitative Analysis of Patients' Perceptions of Shared Decision Making in the Emergency Department: "Let Me Know I Have a Choice"

      Schoenfeld, Elizabeth M.; Goff, Sarah L.; Downs, Gwendolyn; Wenger, Robert J.; Lindenauer, Peter K.; Mazor, Kathleen M. (2018-07-01)
      BACKGROUND AND OBJECTIVES: Despite increasing attention to the use of shared decision making (SDM) in the emergency department (ED), little is known about ED patients' perspectives regarding this practice. We sought to explore the use of SDM from the perspectives of ED patients, focusing on what affects patients' desired level of involvement and what barriers and facilitators patients find most relevant to their experience. METHODS: We conducted semistructured interviews with a purposive sample of ED patients or their proxies at two sites. An interview guide was developed from existing literature and expert consensus and based on a framework underscoring the importance of both knowledge and power. Interviews were recorded, transcribed, and analyzed in an iterative process by a three-person coding team. Emergent themes were identified, discussed, and organized. RESULTS: Twenty-nine patients and proxies participated. The mean age of participants was 56 years (range, 20 to 89 years), and 13 were female. Participants were diverse in regard to race/ethnicity, education, number of previous ED visits, and presence of chronic conditions. All participants wanted some degree of involvement in decision making. Participants who made statements suggesting high self-efficacy and those who expressed mistrust of the health care system or previous negative experiences wanted a greater degree of involvement. Facilitators to involvement included familiarity with the decision at hand, physicians' good communication skills, and clearly delineated options. Some participants felt that their own relative lack of knowledge, compared to that of the physicians, made their involvement inappropriate or unwanted. Many participants had no expectation for SDM and although they did want involvement when asked explicitly, they were otherwise likely to defer to physicians without discussion. Many did not recognize opportunities for SDM in their clinical care. CONCLUSIONS: This exploration of ED patients' perceptions of SDM suggests that most patients want some degree of involvement in medical decision making but more proactive engagement of patients by clinicians is often needed. Further research should examine these issues in a larger and more representative population.
    • Adapting a Traumatic Brain Injury Goals-of-Care Decision Aid for Critically Ill Patients to Intracerebral Hemorrhage and Hemispheric Acute Ischemic Stroke

      Goostrey, Kelsey; Lee, Christopher; Jones, Kelsey; Quinn, Thomas; Moskowitz, Jesse; Pach, Jolanta J.; Knies, Andrea K.; Shutter, Lori; Goldberg, Robert J.; Mazor, Kathleen M.; et al. (2021-03-09)
      Objectives: Families in the neurologic ICU urgently request goals-of-care decision support and shared decision-making tools. We recently developed a goals-of-care decision aid for surrogates of critically ill traumatic brain injury patients using a systematic development process adherent to the International Patient Decision Aid Standards. To widen its applicability, we adapted this decision aid to critically ill patients with intracerebral hemorrhage and large hemispheric acute ischemic stroke. Design: Prospective observational study. Setting: Two academic neurologic ICUs. Subjects: Twenty family members of patients in the neurologic ICU were recruited from July 2018 to October 2018. Interventions: None. Measurements and Main Results: We reviewed the existing critically ill traumatic brain injury patients decision aid for content and changed: 1) the essential background information, 2) disease-specific terminology to "hemorrhagic stroke" and "ischemic stroke", and 3) disease-specific prognosis tailored to individual patients. We conducted acceptability and usability testing using validated scales. All three decision aids contain information from validated, disease-specific outcome prediction models, as recommended by international decision aid standards, including careful emphasis on their uncertainty. We replaced the individualizable icon arrays graphically depicting probabilities of a traumatic brain injury patient's prognosis with icon arrays visualizing intracerebral hemorrhage and hemispheric acute ischemic stroke prognostic probabilities using high-quality disease-specific data. We selected the Intracerebral Hemorrhage Score with validated 12-month outcomes, and for hemispheric acute ischemic stroke, the 12-month outcomes from landmark hemicraniectomy trials. Twenty family members participated in acceptability and usability testing (n = 11 for the intracerebral hemorrhage decision aid; n = 9 for the acute ischemic stroke decision aid). Median usage time was 22 minutes (interquartile range, 16-26 min). Usability was excellent (median System Usability Scale = 84/100 [interquartile range, 61-93; with > 68 indicating good usability]); 89% of participants graded the decision aid content as good or excellent, and greater than or equal to 90% rated it favorably for information amount, balance, and comprehensibility. Conclusions: We successfully adapted goals-of-care decision aids for use in surrogates of critically ill patients with intracerebral hemorrhage and hemispheric acute ischemic stroke and found excellent usability and acceptability. A feasibility trial using these decision aids is currently ongoing to further validate their acceptability and test their feasibility for use in busy neurologic ICUs.
    • Factors Associated With Patient Engagement in Shared Decision-Making for Stroke Prevention Among Older Adults with Atrial Fibrillation

      Mehawej, Jordy; Saczynski, Jane; Abu, Hawa Ozien; Gagnier, Marc; Bamgbade, Benita A.; Lessard, Darleen M.; Trymbulak, Katherine; Saleeba, Connor; Kiefe, Catarina I.; Goldberg, Robert J.; et al. (2021-09-01)
      Objective: To examine the extent of, and factors associated with, patient engagement in shared decision-making (SDM) for stroke prevention among patients with atrial fibrillation (AF). Methods: We used data from the Systematic Assessment of Geriatric Elements-Atrial Fibrillation study which includes older ( > /=65 years) patients with AF and a CHA2DS2-VASc > /=2. Participants reported engagement in SDM by answering whether they actively participated in choosing to take an oral anticoagulant (OAC) for their condition. Multiple logistic regression was used to assess associations between sociodemographic, clinical, geriatric, and psychosocial factors and patient engagement in SDM. Results: A total of 807 participants (mean age 75 years; 48% female) on an OAC were studied. Of these, 61% engaged in SDM. Older participants ( > /=80 years) and those cognitively impaired were less likely to engage in SDM, while those very knowledgeable of their AF associated stroke risk were more likely to do so than respective comparison groups. Conclusions: A considerable proportion of older adults with AF did not engage in SDM for stroke prevention with older patients and those cognitively impaired less likely to do so. Clinicians should identify patients who are less likely to engage in SDM, promote patient engagement, and foster better patient-provider communication which may enhance long-term patient outcomes.