Broadening the understanding of fatigue in multiple sclerosis: a qualitative study protocol of the EMA-FAMS project

Multiple sclerosis (MS) is a common central nervous system disease among young adults worldwide and Finland is one of the high-risk MS regions in Europe. Fatigue affects around 80% of individuals with MS, with prevalence rising to 95% as the disease progresses. Fatigue significantly limits daily activities and is associated with poorer employment outcomes and reduced quality of life. The objective of this qualitative study is to explore the lived experiences of individuals with MS and conceptions of MS-related fatigue among physiotherapists.

This qualitative study is part of a larger research project entitled 'Building conceptualisation and understanding of momentary fatigue and activity-related fatigability in daily life for people with multiple sclerosis' (EMA-FAMS), consisting of several studies conducted from 2024 to 2028. For this qualitative study, 10 individuals with relapsing-remitting MS will be interviewed using a phenomenological approach to collect their lived experiences of fatigue. Additionally, 15 physiotherapists with experience in MS rehabilitation will be interviewed using a phenomenographic approach to explore their conceptions of MS-related fatigue. All interviews will be conducted remotely during 2025-2026. Interview data will be analysed in two phases using interpretative phenomenological analysis (IPA) and phenomenographic analysis methods.

The EMA-FAMS study project has obtained ethical approval from the Regional Medical Research Ethics Committee of the Helsinki University Hospital District (HUS/10011/2024), and all the participants will provide written consent. Findings of this study will be shared through peer-reviewed articles, at academic conferences and with public healthcare and healthcare professionals.