The presence and burden of cognitive issues: discordance between the perception of neurologists and people living with multiple sclerosis

Abstract

AbstractBackground and purposeCognitive impairment is a common symptom of multiple sclerosis (MS) and occurs in more than 40% of people living with MS (plwMS). No real‐world study has assessed the perception of neurologists and plwMS on cognitive issues.MethodsUsing data from the 2011–2019 Adelphi MS Disease Specific Programme database, this real‐world, retrospective, cross‐sectional multi‐cohort study included people aged ≥18 years with relapsing–remitting MS and secondary progressive MS from the United States, UK and the EU. Neurologists provided data on the patient record form for plwMS, with the same plwMS invited to voluntarily complete a patient self‐completion form: a questionnaire about their experiences with MS.ResultsOf 25,374 plwMS, 4817 who provided information on cognitive and mood symptoms were included in the analysis. Of the plwMS, 68% and 59% reported feeling ‘mentally fatigued’ and having ‘difficulty concentrating’, respectively. Neurologists reported only 27% of plwMS as having ‘difficulty concentrating’ and 15% of plwMS as having ‘short‐/long‐term memory problems’. Neurologists reported cognitive or mood symptoms as ‘not experienced’ by a higher percentage of participants with relapsing–remitting MS than secondary progressive MS. Of the plwMS who experienced ‘difficulty concentrating’, most had a concomitant feeling of being ‘mentally fatigued’ (52%), followed by ‘feeling anxious or tense’ (49%) and ‘feeling depressed’ (44%). In plwMS, caregivers reported ‘difficulty concentrating’ (16%) as the most common cognitive issue.ConclusionA clear discordance was observed between neurologists and plwMS regarding the perception of the cognitive and neuropsychiatric issues. These results underline the under‐perception of cognitive and emotional affective symptoms in plwMS during neurological consultations.