Challenging conventional wisdom: Evidence-free tales and an asymptomatic carotid disease decision aid

The management of asymptomatic carotid stenosis is controversial. Carotid stenosis increases the long term risk of stroke, but the annual risks are very low, and while carotid surgery lowers the risk of stroke (from 2% to 1%/yr), the procedure itself can cause death or stroke in about 3% of cases. Focus groups of patients receiving surgery for carotid stenosis revealed an array of concerns regarding treatment choices and the fear that carotid stenosis is a “ticking time bomb” that requires immediate attention. As part of a project to evaluate a Decision Aid (DA) for carotid stenosis to address these concerns, a Decision Quality (DQ) instrument is being developed to measure the depth of understanding and quality of informed decision making in carotid disease. The DQ will be informed by data gathered from a survey of thirty healthcare providers and thirty-one patients who were diagnosed with carotid stenosis. The survey was conducted to determine what both groups consider important facts in making a treatment decision in asymptomatic carotid disease. Except for some practice questions reserved for the physicians and treatment questions posed to those with carotid disease, the survey questions were the same.

Following a brief overview of treatment options in asymptomatic carotid stenosis, the presentation will focus on (1) what an informed patient should know; (2) patient and physician “conventional wisdom challenges”; (3) a summary of the outcomes from the data gathered from the surveys of physicians and patients; and (4) a description of aspects of the decision aid and how it will be evaluated using the DQ. Following description and explanation of the challenges, including the differing perspectives between physician and patient on treatment-related issues, the discussion will shift to how to address these in a web-based decision aid. The DA, for example, illustrates the risks as well as benefits of surgical procedures, risks that are often not discussed by physicians, and graphically demonstrates to patients how they have time to make decisions regarding treatment.