Abstract|Multiple Sclerosis and other Demyelinating Diseases MT 6.3| Volume 357, SUPPLEMENT 1, e474, October 15, 2015

Providing information for newly diagnosed people with multiple sclerosis

      Over the last 20 years, advances in neuroimaging and related modification of diagnostic criteria have brought the multiple sclerosis (MS) diagnosis forward. This, together with the introduction of disease-modifying drugs, has produced a change in the care of newly diagnosed people with MS: Diagnosis disclosure and long-term treatment decisions have moved closer together, and often coincide. Providing adequate information at this critical moment is a common claim of MS patients, even in the most recent surveys. This can be taxing in the stressful circumstance of diagnosis communication, as studies found that the emotional burden on MS patients at diagnosis is high. In addition, MS diagnosis is a process rather that a single event. Proper disclosure and effective communication require thoughtfulness, sensitivity, respect, and responsiveness to the specific needs of that patient. Information and decision aids provide reliable information in an understandable format to support the patient-clinician exchange and inform decision making. We will discuss the available evidence on the effect of these tools on patients’ knowledge of MS, the achievement of ‘informed choice’, care satisfaction, and other relevant outcomes. The development of information and decision aids tools that satisfy quality standards, as well as their necessary periodic updating, is resource demanding. International, web based resources that are produced and updated with direct involvement of key stakeholders may be the most effective way forward.