Self-Reported Changes in Cognition, Communication and Swallowing in Multiple Sclerosis: Data from the Swedish Multiple Sclerosis Registry and from a National Survey.

Purpose: The aim of this study was to investigate self-reported cognition, speech, communication and swallowing changes in a large sample of individuals with multiple sclerosis (MS) in Sweden. A second aim was to update information about speech and language pathology (SLP) services received by people with MS (pwMS).

Method: Self-ratings of cognition, speech/communication and swallowing registered by pwMS between 2012 and 2018 were retrieved from the Swedish MS Registry. In addition, more detailed information about speech, communication, swallowing and provision of SLP services was collected using an online survey distributed via a national patient organization.

Results: In total, entries from 5,289 pwMS were retrieved from the MS Registry. Nearly two thirds of the respondents reported that cognition was affected to some degree, whereas approximately one third perceived some difficulties with speech/communication. A smaller group reported swallowing problems. The majority of those who reported problems with speech/communication also reported problems with cognition. Among the 440 individuals who responded to the MS survey, word-finding difficulties were the most frequently self-reported problem related to communication, and the second most common problem was getting off topic. In all, close to four out of five respondents experienced at least one symptom related to speech and communication, such as speech-related fatigue or imprecise articulation. Swallowing difficulties were reported by one out of four respondents in the MS survey. As a result of their speech difficulties, up to one in three experienced changes in professional or social roles and participation. A limited number of respondents had received SLP services, the most common intervention being voice training.

Conclusions: In MS, changes associated with cognition as well as speech/communication are frequent, cognitive-linguistic symptoms being the most common. Swallowing difficulties are also relatively prevalent. Access to SLP services seems to be insufficient compared to prevalence of perceived symptoms. Considering that the majority of pwMS are part of the working-age population, access to SLP services must be more highly prioritized and must address cognitive-linguistic problems as well as voice, speech and swallowing dysfunction.