Focus Groups Help Develop Patient-Centered Decision Support For Stroke Patients and Caregivers Interview with:
Carole Decker, RN, PhD, CPHQ, FAHA

Director, Cardiovascular Outcomes Research
Saint Luke’s Mid America Heart Institute
Kansas City, MO 64111

Medical Research: What is the background for this study? What are the main findings?

Dr. Decker: Stroke is the leading cause of disability and the fifth leading cause of death. The utilization of thrombolytic therapy is the national standard of care for acute ischemic stroke (AIS) treatment resulting in improved outcomes at 90 days and yet only 7% of patients with AIS receive a thrombolytic. The American College of Emergency Physicians emphasizes the importance of using a shared medical decision-making model with AIS patients and their caregivers to discuss benefits and risks of treatment. The recommended door-to-needle (emergency door to thrombolytic administration) is 60 minutes to achieve the optimal patient outcomes which can be problematic in that conversation on benefits and risks occurs in a hurried emergency setting.

Multiple risk models to identify individualized benefits and risks of thrombolytic therapy have been developed but few are used prospectively and are not used at the point of care. Our team created ePRISM (Personalized Risk Information Services Manager), a Web-based tool, to generate personalized documents with patient-specific outcomes based on validated risks models. To support knowledge transfer and creation of a shared decision-making tool, our multidisciplinary team conducted qualitative interviews to define the information needs and preferred presentation format for stroke survivors, caregivers, and clinicians considering thrombolytic treatment.

Medical Research: What are the main findings?

Dr. Decker: 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 (APN; n=20), several themes emerged. Survivors typically did not recall being educated at the time of treatment whereas families provided vivid, emotional recollections of the event. Participants expressed feelings of information overload and stress-induced confusion during the decision making process. There was unanimous agreement that a decision tool for thrombolytic therapy would have been helpful and needed for future stroke patients. Four themes emerged as participants expressed a need for more information:

(1) definition of good outcome, participants preferred a more inclusive definition including modified Rankin scale (mRS) score of 0, 1, and 2 over a more restrictive definition of only mRS score 0 and 1;

(2) provide population level and personalized risks and benefits;

(3) frame risk positively and; (4) present both risk and benefit data.

Clinicians described two themes in common that supported treatment:

(1) timely presentation of the patient to the Emergency Department and
(2) the presence or availability of neurology support.

Emergency physicians and APN’s shared differing perspectives that emerged in 4 themes: (1) knowledge of long-term outcomes
(2) impression of data
(3) communication of risk and benefit, and
(4) the use of written/educational materials.

The results from the focus groups and clinicians interviews were used to develop a precision medicine-based decision support tool for patients and care providers, Rapid Evaluation for Stroke Outcomes using Lytics in a Vascular Event (RESOLVE) tool for AIS patients. The RESOLVE tool for patients has three pages: 1 page visually presenting and describing an ischemic stroke and thrombolytic therapy and 2 pages for risk-benefit presentations, one at the population level and the other based on patient’s individual estimated benefits and risks. Whereas the clinician tool was a single page that graphically presents the unique benefit of r-tPA, as a function of time, for an individual patient in whom the clinician is considering thrombolytic therapy. In addition the risk of intracranial hemorrhage (ICH) resulting in a severe disability or death is displayed.

Medical Research: What should clinicians and patients take away from your report?

Dr. Decker: Strokes are a time critical diagnosis and to achieve the best outcomes the administration of thrombolytic must be expedited in this emergency situation. Both clinicians and patients agree making a decision to treat or not treat can be very stressful, communication may be misunderstood and decision making is compounded by the need to balance risk/benefit ratios with therapy in a highly time pressured situation. A conversation using shared decision-making tools like RESOLVE is a way to improve communication and informed consent in health care. Patients gain knowledge, understand benefits and risks better, and feel less conflicted when making decisions. It also can provide clinicians with individualized evidence-based risk and benefits including ICH can enhance their confidence in using this therapy.

Medical Research: What recommendations do you have for future research as a result of this study?

Response: Our findings have implications that go beyond tools for this specific clinical setting to other contexts where shared decision making and risks and benefits are being developed. Process and implementation research would be of particular relevance for this study. The complexity and rapidity of care will require careful integration of data collection into clinical workflow so that a tool can be generated and shared with patients and providers rapidly and without delaying door-to-needle time. Further qualitative research could examine whether the RESOLVE tool improves patient’s understanding of risk and benefits of thrombolytic therapy and clinician confidence and comfort with decision-making and would need to be tested in actual clinical practice. Further study in broader purpose hospitals such as academic, community, rural, and tele-health could elicit very important information on what setting and what professional provider would benefit the most by using the RESOLVE tool in the treatment of AIS.


Decker C, Chhatriwalla E, Gialde E, Garavalia B, Summers D, Quinlan ME, Cheng E, Rymer M, Saver JL, Chen E, Kent DM, Spertus JA. Patient-Centered Decision Support in Acute Ischemic Stroke: Qualitative Study of Patients’ and Providers’ Perspectives. Circ Cardiovasc Qual Outcomes. 2015;8(6 Suppl 3):S109-116.

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Carole Decker, RN, PhD, CPHQ, FAHA (2015). Focus Groups Help Develop Patient-Centered Decision Support For Stroke Patients and Caregivers

Last Updated on December 23, 2015 by Marie Benz MD FAAD