Background— National guidelines endorse recombinant tissue-type plasminogen activator (r-tPA) in eligible patients with acute ischemic stroke to improve patients’ functional recovery. However, 23% to 40% of ideal candidates with acute ischemic stroke for reperfusion are not treated, perhaps because of the difficulty in explaining the benefits and risks of r-tPA within the frenetic pace of emergency department care. To support better knowledge transfer and creation of a shared decision-making tool, we conducted qualitative interviews to define the information needs and preferred presentation format for stroke survivors, caregivers, and clinicians considering r-tPA treatment. Methods and Results— A multidisciplinary team used qualitative research methods to identify informational needs and strategies for describing the benefits and risks of r-tPA in a clinical setting. Through focus groups (n=10) of stroke survivors (n=39) and caregivers (n=24) and individual interviews with emergency physicians (n=23) and advanced practice nurses (n=20), several themes emerged. Survivors and caregivers preferred a broader definition of a good outcome (independence, rather than no significant disability), simpler graphs as compared with detailed pictographs, and presentation of both population and individualized benefits (framed positively) and risk of receiving r-tPA. Some physicians expressed skepticism with the data and the ability to present risk/benefit information emergently, whereas other physicians and most advanced practice nurses thought such information would improve care. Physicians stressed the importance of presenting the risk of thrombolytic-related intracranial hemorrhage. Conclusions— This study suggests that a positively framed risk–benefit tool with graphical presentations of general and patient-specific risk estimates could support patients and providers in considering r-tPA for acute ischemic stroke. Clinical Trial Registration— URL: http://www.clinicaltrials.gov . Unique identifier: NCT01864928.
Background: Intravenous tissue plasminogen activator (IVtPA) is the only approved treatment for acute ischemic stroke (AIS), but is used in only 4-6% of potentially eligible patients. The risk of hemorrhage is fairly easy to communicate, but the benefits of treatment in reducing disability are difficult to estimate for individual patients. During development of an evidence-based tool to encourage participation of stroke survivors and families in tPA treatment decisions, we conducted qualitative interviews to learn how best to present risk/benefit data. Methods: We conducted 3 focus groups to determine effective strategies for presenting the beneficial outcome (modified Rankin Scale; mRS) and the risk of bleeding. Twelve stroke survivors (mean age = 54; 4 female) and 3 family members (mean age = 68; 3 female) participated at 2 different sites. Results: The majority of survivors do not recall being educated about acute stroke or treatment, though families provide vivid recollection. Four themes emerged as they expressed a need for more information (subject identified by Patient/Caregiver, gender, study number, and site): A ‘good’ outcome is a mRS of 0,1, or 2 - “¼I think that 0-2 is REALLY a good outcome as [I’ve] seen severely disabled patients throughout recovery” (PM04LA). Preferred both overall and personalized outcomes estimates: “Tell me my individual risk and then show me how that compares to the general population. As far as the general population, maybe your risk is higher than others.” (PM07KC). Present risk as ‘positive’ outcomes (e.g. the likelihood of mRS 0-2, rather than 3-6): “’Bad outcome’, I don’t like those words. You’re talking about somebody I love, you know.” (CF10KC). Present both risks and benefits of tPA: “I would be open to take a risk if I thought there would be a good chance of a major improvement” (PM08KC). Conclusions: Stroke survivors and families desire more information at the time of acute stroke and agreed that mRS of 0-2 constitutes a good outcome. They articulated what information would be important for deciding about treatment with IVtPA and this will be used to create a decision aid to deliver individualized risk/benefit estimates in an understandable format that can support communication and shared medical decision-making.
Background: During the early phase of ischemic stroke (IS), thrombolytic (recombinant tissue plasminogen activator; rt-PA) therapy has been shown to effectively reverse symptoms and improve outcomes. However, serious bleeding can occur, which has discouraged both patients and physicians from using rt-PA. The purpose of the overall study is to create a decision-making tool that accurately depicts the risk and benefits of rt-PA in a graphical format that effectively engages physicians, patients and their families. Methods: To better understand the most effective method for presenting the probabilities of outcomes we used eye-tracking technology (Applied Science Laboratories D-6 optics) to assess the manner in which participants studied graphs of varying formats. We recorded which components of the graphs that participants looked at, and how long they looked at these graph components. The graphs were developed from a series of qualitative studies and showed 3 representations rt-PA benefits drawn from the NINDS data: bar; stacked bar; and iconic (person outline figures) graphs. Each presented probabilities for outcomes ranging from little/no disability to severe disability/death and risk of bleeding with or without rt-PA use. Stroke survivors or family members were randomly presented with one of the graphs and asked to imagine they were consulting with a physician about using rt-PA for a family member who had just had a stroke. Comprehension was tested with questions assessing knowledge of the risk and outcome percentages presented in the graphs. Results: Participants (n=12) spent a longer time studying the iconic and bar graphs (mean = 64 seconds and 63 seconds, respectively) than the stacked bar graph (mean = 46 seconds). Study time in different graph regions varied by graph type. Participants spent 16%, 7.5 %, and 1.4 % of their study time looking at the key risk information in the stacked bar, bar, and iconic graphs, respectively. In addition, 4 out of 5 subjects who incorrectly identified the risk of bleeding on the comprehension test had studied the iconic graph. When shown all three formats, participants indicated the iconic graph to be confusing and the stacked bar to be most informative. Conclusions: Our preliminary data suggest that stacked bar graphs facilitate better understanding of the risks and benefits of rt-PA in acute IS. Presenting data in this format could better engage patients and families in making treatment decisions in the setting of IS.
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