LAUSR

BACKGROUND In patients with relapsing forms of multiple sclerosis (MS), relapses are often unrecognized. These missed relapses have broad implications for the conduct of clinical trials as well as for the care and prognosis of people with multiple sclerosis (MS). With the ultimate goal of developing new methods to identify relapse, the purpose of this qualitative research with patients and clinicians was to examine the definition, symptoms, and impact of relapse. METHODS This qualitative study involved semi-structured interviews with clinicians specializing in MS and people with relapsing-remitting (RR) MS. A brief literature review was conducted to inform the development of interview guides. Qualitative data were gathered from 10 clinicians in a series of individual interviews and one focus group, followed by a series of interviews with 20 patients. Thematic analysis was conducted using ATLAS.ti to identify concepts emerging from the interviews. RESULTS Both clinicians and people with MS tend to describe classic neurologic symptoms that are confirmable on exam as indicative of relapses (e.g., sensory changes, vision issues, and walking difficulties), while also acknowledging that several less quantifiable symptoms are common (e.g., fatigue, pain, and cognitive issues). Patients described far-reaching impacts of relapse beyond just the quantifiable manifestations of the disease evaluated by commonly-used measures of MS severity and disability. CONCLUSION MS relapses, which have substantial impact on patient functioning, appear to include symptoms beyond those in typical definitions of relapse. Incorporating such constructs into new measures of relapse could lead to improved recognition of relapse episodes.