Emily C. Casady, Brian C. Healy, Tarun Singhal, Jonathan D. Zurawski, Tanuja Chitnis, Howard L. Weiner, and Bonnie I. Glanz
Background
Multiple sclerosis is a chronic, demyelinating disease that requires treatment decisions at multiple points in the disease course. Shared decision-making (SDM) is an approach to treatment decision-making that actively involves the patient and physician in reaching a treatment choice and may be ideally suited to treatment decisions in MS.
Methods
We sent 500 patients with a diagnosis of MS seen at a specialty MS center and participating in the Comprehensive Longitudinal Investigation of Multiple Sclerosis at the Brigham and Women’s Hospital a questionnaire to assess SDM, satisfaction with the treatment decision-making process, and patient and disease characteristics. The questionnaire also asked patients to identify any additional information or decision aids that would have been helpful in treatment decision-making.
Results
161 patients completed the questionnaire and 134 were currently treated. Treated patients reported high levels of SDM and satisfaction with the treatment decision-making process. There were no differences in patients treated with high versus low efficacy treatments, relapsing vs. progressive disease, high vs. low disability, high vs. low risk propensity, and high vs. low expectations of disease worsening. Approximately 65% of patients indicated that they would have liked additional information at the time of their last treatment decision including information regarding the likelihood of serious side effects and disability worsening.
Conclusions
MS patients treated at an MS specialty clinic reported high levels of SDM and satisfaction with the treatment decision-making process. Additional studies are needed to determine if SDM leads to better clinical outcomes. Additional research is also needed to assess the role of decision aids in supporting SDM