Carole Decker1, Emily Chhatriwalla2, Elizabeth Gialde2, Brian Garavalia2, Debbie Summers2, Miriam E Quinlan2, Eric Cheng2, Marilyn Rymer2, Jeffrey L Saver2, Er Chen2, David M Kent2, John A Spertus2. 1. From the School of Nursing (C.D.) and Department of Biomedical and Health Informatics, School of Medicine (J.A.S.), University of Missouri-Kansas City; Cardiovascular Outcomes Research, Saint Luke's Hospital of Kansas City (C.D., E.C., E.G., B.G., D.S., J.A.S.); Department of Neurology, Geffen School of Medicine at UCLA (M.E.Q., E.C.) and UCLA Comprehensive Stroke Center (J.L.S.); Center for Advanced Brain and Neurological Care, University of Kansas Hospital (M.R.); US Medical Affairs, Cardiometabolism/Neuroscience, Genentech (E.C.); and Predictive Analytics and Comparative Effectiveness (PACE) Center, Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, MA (D.M.K.). c1decker@saint-lukes.org. 2. From the School of Nursing (C.D.) and Department of Biomedical and Health Informatics, School of Medicine (J.A.S.), University of Missouri-Kansas City; Cardiovascular Outcomes Research, Saint Luke's Hospital of Kansas City (C.D., E.C., E.G., B.G., D.S., J.A.S.); Department of Neurology, Geffen School of Medicine at UCLA (M.E.Q., E.C.) and UCLA Comprehensive Stroke Center (J.L.S.); Center for Advanced Brain and Neurological Care, University of Kansas Hospital (M.R.); US Medical Affairs, Cardiometabolism/Neuroscience, Genentech (E.C.); and Predictive Analytics and Comparative Effectiveness (PACE) Center, Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, MA (D.M.K.).
Abstract
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: 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.
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