Perspectives from the patient: A content analysis of communication changes, impact, and strategies to facilitate communication in multiple sclerosis

Abstract

Purpose: Communication changes in multiple sclerosis (MS) are under-explored and under-recognised. Persons with MS (PwMS) are experts in their condition and play a valuable role in informing clinicians and researchers of their condition. This study aimed to investigate the perspectives of PwMS on: (1) MS-related communication changes, (2) the impact of these communication changes across key aspects of a person’s life, including work/studies, relationships, and general quality of life, and (3) strategies used to facilitate communication in daily interactions. Method: Two-hundred and sixty PwMS were recruited internationally and completed an online questionnaire. Content analysis was used to analyse open-ended questionnaire responses. Result: One-hundred and ninety-seven (75.8%) participants reported communication changes, including language, cognitive, speech, voice, and fluency changes. Participants described a variety of personal and environmental factors that influence communication negatively, such as fatigue, stress, and heat. Communication changes were reported to impact on psychological wellbeing, interpersonal relationships, participation and identity in the workforce and career pathways, and tertiary studies. Around 40% of participants reported using a range of overt and covert strategies to manage communication changes. Only 11.2% (n = 22/197) of participants who reported communication changes accessed speech-language pathology (SLP) services. Conclusion: PwMS can experience a wide spectrum of communication changes. These communication changes can have a profound and far-reaching impact on psychological wellbeing and societal participation. Engagement with SLP services is limited compared to the reported prevalence of communication changes. There is a need to raise awareness of the role of SLP in service provision for PwMS to manage communication changes. This paper discusses and provides suggestions for SLP services for PwMS with communication changes. There is a timely need to develop evidence-based interventions to support PwMS manage communication changes and reduce their impact.