Shared Decision-Making and Autonomy among U.S. Participants with Multiple Sclerosis in the NARCOMS Registry

School of Public Health

Dr. Stacey Cofield

Treatment decisions in multiple sclerosis (MS) are impacted by many factors. These decisions may be made by the patient, doctor, or both. With newdisease-modifying therapies (DMTs) emerging, the complexity surrounding treatment decisions is increasing, further emphasizing the importance of understanding decision-making preferences.

NARCOMS (North American Research Committee on Multiple Sclerosis) Registry participants completed the Fall 2014 Update survey, which included the Control Preferences Scale (CPS). The CPS consists of five images showing different patient/doctor roles in treatment decision-making. The images were collapsed to three categories: patient-centered, shared, and physician-centered decision-making preferences. Associations between decision preferences and demographic and clinical factors were evaluated using multivariable logistic regression.

Of 7009 participants, 79.3 percent were female, 93.5 percent were White, and mean age (SD) was 57.6 (10.3) years; 56.7 percent reported a history of relapses. Patient-centered decision-making was most commonly preferred by participants (47.9 percent), followed by shared decision-making (SDM; 42.8 percent). SDM preference was higher for females and those taking DMTs and increased with age and disease duration (all P < .05). Patient-centered decisions were most common for respondents not taking a DMT at the time of the survey and were preferred by those who had no DMT history compared with those who had previously taken a DMT (P < .0001). There was no difference in SDM preference by current MS disease course after adjusting for other disease-related factors.

Responders reported most commonly considering their doctor’s opinion before making a treatment decision and making decisions jointly with their doctor. DMT use, gender, and age were associated with decision-making preference.

Other authors include: Ms. Nina Thomas, Genentech, Inc., San Francisco, CA; Dr. Tuula Tyry, Dignity Health, St. Joseph’s Hospital and Medical Center, Phoenix, AZ; Dr. Robert J. Fox, Mellen Center for Multiple Sclerosis, Cleveland Clinic; and Dr. Amber Salter, Division of Biostatistics, Washington University in St. Louis, MO.

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