Abstract
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).
Objective:
To understand 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 1000 participants in the North American Research Committee on Multiple Sclerosis registry who met inclusion criteria (age ⩾45 years; on most recent DMT for ⩾5 years). Descriptive analysis and structural equation modeling were used.
Results:
Of 1000 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 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.
Conclusions:
Most individuals with MS report being unlikely to consider stopping MS therapy if their disease was considered “non-active.” As the results of studies concerning DMT discontinuation are obtained, information from providers will be an important part of individuals’ decision-making process.
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