title: Patient-Centered Decision Support in Acute Ischemic Stroke: Qualitative Study of Patients' and Providers' Perspectives.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  URL: http://www.clinicaltrials.gov. Unique identifier: NCT01864928.
authors.affiliation: 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.
authors.forename: Carole
authors.initials: C
authors.lastname: Decker
authors.affiliation: 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.).
authors.forename: Emily
authors.initials: E
authors.lastname: Chhatriwalla
authors.affiliation: 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.).
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Gialde
authors.affiliation: 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.).
authors.forename: Brian
authors.initials: B
authors.lastname: Garavalia
authors.affiliation: 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.).
authors.forename: Debbie
authors.initials: D
authors.lastname: Summers
authors.affiliation: 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.).
authors.forename: Miriam E
authors.initials: ME
authors.lastname: Quinlan
authors.affiliation: 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.).
authors.forename: Eric
authors.initials: E
authors.lastname: Cheng
authors.affiliation: 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.).
authors.forename: Marilyn
authors.initials: M
authors.lastname: Rymer
authors.affiliation: 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.).
authors.forename: Jeffrey L
authors.initials: JL
authors.lastname: Saver
authors.affiliation: 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.).
authors.forename: Er
authors.initials: E
authors.lastname: Chen
authors.affiliation: 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.).
authors.forename: David M
authors.initials: DM
authors.lastname: Kent
authors.affiliation: 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.).
authors.forename: John A
authors.initials: JA
authors.lastname: Spertus
mesh_terms: D000208:Acute Disease; D002545:Brain Ischemia / Q000188:drug therapy / Q000453:epidemiology*; D017028:Caregivers; D003661:Decision Support Techniques; D019317:Evidence-Based Medicine; D005260:Female; D005343:Fibrinolytic Agents / Q000627:therapeutic use; D006282:Health Personnel; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D018802:Patient-Centered Care; D010361:Patients; D011994:Recombinant Proteins / Q000627:therapeutic use; D018570:Risk Assessment; D020521:Stroke / Q000188:drug therapy / Q000453:epidemiology*; D010959:Tissue Plasminogen Activator / Q000627:therapeutic use
chemical_list: D005343:Fibrinolytic Agents; D011994:Recombinant Proteins; D010959:Tissue Plasminogen Activator
keywords: caregivers; intracranial hemorrhage; stroke; survivors; treatment outcome