Disease Modifying Therapy and Multiple Sclerosis: Insider Perspectives on Utilization and Adherence.

TitleDisease Modifying Therapy and Multiple Sclerosis: Insider Perspectives on Utilization and Adherence.
Publication TypeJournal Article
AuthorsKuehn CM, Johnson KL, Yorkston KM, Klasner ER, Amtmann D
JournalInternational Journal of MS Care

Multiple sclerosis is thought to be an autoimmune disease developing from a complex interaction of early exposure to viruses and genetic vulnerability. Disease-modifying therapies (DMT), known as the ABC drugs, Avonex®, Rebif®, Betaseron®, and Copaxone®, are delivered by subcutaneous or intramuscular injection and can reduce exacerbation rates by 30% in RRMS. They also show potential for slowing disease progression in SPMS. There is general consensus that early treatment with DMT can prolong the onset of disability, and treatment should begin immediately after confirmed diagnosis. Despite these recommendations, not all patients who should be on DMT are, and many who begin treatment will stop. The purpose of this study was to better understand which factors contribute to the decision-making processes of individuals with MS regarding the use of DMT. Using qualitative research methodology that examined the experiences of the participants, four themes emerged: DMT is beneficial; The Personal Cost of DMT—More Than Money; Opting Out of DMT; and Physician-Discouraged DMT. Subjects using DMT felt more control over their disease, improved predictability, and better stability. However, these benefits had costs in terms of side effects, financial costs, and emotional struggles to overcome fear, denial, and uncertainty about the effectiveness of the drugs. Individuals not taking DMT cited barriers to treatment such as fear of needles, lack of overt symptoms, and a lack of desire to have regular injections as reminders of their disease. Physician discouragement or concerns about costs also contributed to opting out of DMT. As treatments for MS continue to improve, it is important for practitioners to understand factors that contribute to the patients’ decisions to use or not use DMT. Careful consideration of patient perspective and potential anxiety regarding treatment could improve treatment participation and adherence and have long-term benefits for patient outcomes.


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