Patient Perspectives on Disease-Modifying Therapy in Multiple Sclerosis

The purpose of this study was to understand factors contributing to the decision-making processes of individuals with multiple sclerosis (MS) regarding the use of disease-modifying therapy (DMT). Semi-structured qualitative interviews were conducted with 18 individuals with MS. Qualitative interviews revealed two major themes: opting for and opting out of DMT. Participants indicated that stable health, predictability, and perceived control were reasons to be on DMT. They also indicated that taking DMT is not without personal cost, both financial and psychological (eg, denial, fear, and uncertainty). Fear of needles and side effects, not feeling “sick enough,” the costs of medication versus benefits, and discouragement from physicians were given as reasons for opting out of DMT. Participants also reported that restarting DMT after they had stopped was difficult, especially if they felt better when not using DMT. Early treatment of MS with DMT, especially for those with relapsing-remitting MS, is strongly supported by published findings. Although participants in our study revealed significant barriers to initiating and adhering to DMT, recent advances in clinical practice and improved coverage for treatment costs should reduce these barriers.