Abstract TP234: What Stroke Survivors and Families Need to Know For Decision-making During Acute Ischemic Stroke Care - A Qualitative Research Study

Background: Explaining the benefits and risks of tissue plasminogen activator (tPA) is typically done through hurried verbal explanations in the emergency department, but it may not be understood by patients and caregivers. However, spending more time to explain the risks and benefits may delay the administration of tPA. We sought to develop a decision aid tool to facilitate this communication. Methods: A multidisciplinary research team searched available materials of stroke descriptions intended for a lay audience. The research team and medical illustrator also developed different formats of presenting results from the NINDS tPA trial. We conducted focus groups of stroke survivors and their caregivers at two medical centers to provide feedback on what information should be communicated and how it should be presented. Results: To date, we have convened three focus groups. We have enrolled 12 stroke survivors with a mean age of 54. Two had received tPA. We also enrolled three caregivers with a mean age of 68. Survivors typically did not recall being educated about acute stroke or its treatment during the hospitalization. Participants preferred broadening the definition of a “good” outcome to functional independence (i.e. modified Rankin score of 0-2) over a narrower one of being symptom-free. They also preferred viewing information about the increased chance of a good outcome rather than the decreased chance of a bad outcome such as death. Participants’ opinions sometimes differed from researchers’, such as the choice of colors to depict good outcome or death and the preference of simple bar graphs over pictographs. Conclusions: The different opinions between researchers and patients and caregivers highlight the need to obtain input from all stakeholders in designing effective decision aid tools. Further focus groups are planned to refine the decision-aid tool. We also plan to pilot-test the implementation of this tool in the workflow of managing patients with stroke in the emergency department.