Perspectives of Individuals with Multiple Sclerosis on Discontinuation of Disease Modifying Therapies
Multiple Sclerosis Journal,
Background: Therapeutic research in multiple sclerosis (MS) has focused on the development of treatments with little investigation regarding the possibility of discontinuation of disease modifying therapies (DMTs). Objectives: To understand both the opinion of individuals with MS concerning stopping DMTs and the factors that influence the decision making process.
Methods: A mixed method approach was used starting with three focus groups from which a survey was developed. This survey was sent to 1,000 participants in the North American Research Committee on Multiple Sclerosis registry who met inclusion criteria (≥45 years; on most recent DMT for ≥5 years). Descriptive analysis and structural equation modeling were used.
Results: Of 1,000 participants receiving the survey, 377 provided complete responses and met inclusion criteria. Only 11.9% of participants reported that if their disease was considered stable, they would be very likely/likely to consider coming off medications. A high level of external locus of control in influential others such as physicians significantly decreased the likelihood of considering discontinuation.