Delaying Disability in Multiple Sclerosis: Patient Perspectives on Disease Modifying Therapy.

TitleDelaying Disability in Multiple Sclerosis: Patient Perspectives on Disease Modifying Therapy.
Publication TypeJournal Article
AuthorsKuehn CM, Johnson KL, Yorkston KM, Klasner ER, Amtmann D
JournalInternational Journal of MS Care

Multiple Sclerosis, a disabling disease of the central nervous system, affects between 250,000 and 350,000 people living in the U.S. The diagnosis of MS is typically made when young adults are in their early 20s, thus, most are of working age. In addition, people with MS have higher levels of education and socioeconomic status than the population in general. MS is now 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 prevent relapses, reduce brain atrophy and delay disease progression. 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 that 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. Although the cost-effectiveness of DMT has been controversial, recent economic models suggest when long term progression is taken into account, the benefits of DMT outweigh the costs. Effective DMT utilization has public health implications for improved lifetime productivity, health care utilization, and disability prevention in individuals with MS. 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. Learning Objectives: Describe perspectives of patients with multiple sclerosis on utilization of disease modifying therapy. Discuss the public health impact of early intervention and long-term treatment of multiple sclerosis with disease modifying therapy. Recognize patient anxiety about use of disease modifying therapy and develop treatment strategies that take into account best practices and patient perspectives.

UW Medicine Multiple Sclerosis Center

Now located at Northwest Hospital & Medical Center, you may visit the clinic's website or call 206-598-3344 to make an appointment. 

Studies Seeking Volunteers:

Check out our current list of studies