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Updated: Jan 21, 2026
Comprehensive Autopsy Program for Individuals with Multiple Sclerosis
Published on: July 19, 2019
Perspectives of individuals with multiple sclerosis on discontinuation of disease-modifying therapies
Marisa P McGinley1, Philip A Cola2, Robert J Fox1
1Mellen Center for Multiple Sclerosis Treatment and Research, Cleveland Clinic, Cleveland, OH, USA.
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.
Insights
Most individuals with multiple sclerosis (MS) are unlikely to stop disease-modifying therapies (DMTs), even with stable disease. Physician influence significantly impacts decisions about discontinuing MS treatment.
Area of Science:
- Neurology
- Clinical Research
- Patient-Reported Outcomes
Background:
- Therapeutic research in multiple sclerosis (MS) primarily focuses on treatment development.
- Limited investigation exists regarding the discontinuation of disease-modifying therapies (DMTs) in MS patients.
Purpose of the Study:
- To ascertain the perspectives of individuals with MS on discontinuing DMTs.
- To identify factors influencing the decision-making process for stopping MS therapies.
Main Methods:
- A mixed-methods approach was employed, beginning with focus groups to develop a survey.
- A survey was administered to 1000 participants from the North American Research Committee on Multiple Sclerosis registry (age ≥45, on DMT ≥5 years).
- Descriptive analysis and structural equation modeling were utilized for data analysis.
Main Results:
- Out of 377 eligible respondents, only 11.9% would consider discontinuing DMTs if their MS was considered stable.
- A strong external locus of control, particularly physician influence, significantly reduced the likelihood of considering DMT discontinuation.
- The majority of individuals with MS expressed reluctance to stop therapy even with a "non-active" disease state.
Conclusions:
- Individuals with MS are generally disinclined to cease DMTs, even if their disease is inactive.
- Physician recommendations and external influences play a crucial role in the decision-making process regarding DMT discontinuation.
- Future research on DMT discontinuation should incorporate patient perspectives and the role of healthcare providers.
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