Marisa P McGinley1, Philip A Cola2, Robert J Fox1, Jeffrey A Cohen1, John J Corboy3, Deborah Miller1. 1. Mellen Center for Multiple Sclerosis Treatment and Research, Cleveland Clinic, Cleveland, OH, USA. 2. Department of Design & Innovation, Case Western Reserve University, Cleveland, OH, USA. 3. Rocky Mountain MS Center, University of Colorado, Aurora, CO, USA.
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.
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.
Authors: Hiba El Masri; Treasure M McGuire; Christine Dalais; Mieke van Driel; Helen Benham; Samantha A Hollingworth Journal: J Med Libr Assoc Date: 2022-04-01
Authors: Massimiliano Mirabella; Pietro Annovazzi; Wallace Brownlee; Jeffrey A Cohen; Christoph Kleinschnitz; Christian Wolf Journal: Front Neurol Date: 2022-04-15 Impact factor: 4.086