Abstract TP333: Stroke Survivors And Family Perspectives Of Risk/benefit: Developing Resolve (Rapid Evaluation For Stroke Outcomes using Lytics In Vascular Event)
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.
- © 2012 by American Heart Association, Inc.